Transcription
Right, so you certainly don't have to have read my book to get anything from this. But I kind of had this idea to do something like this both because I'm starved for social interaction because of COVID and whatever, you know. So I don't really get a chance to meet with folks, and because I closed my fibromyalgia practice, I'm not interacting as much one-on-one with fibromyalgia patients. So I've been missing that.
I had this idea like, hey, maybe I could kind of do like a book club. And full disclosure, it was actually partly to raise ideas, so go team! What I was thinking is, you know, it's been like seven years since the book was published, and it's been eight years since I wrote it. I thought I could kind of give a little summary about different topics from the book and then give any updates that have happened since the book's publication.
You know, I certainly hope that one day I'll get to do an updated revised edition, but if not, I thought it was pretty reasonable to just kind of do a little video update. These days, I think a lot of us like to get our content via video, and sometimes with the fibro brain, it works better to hear things that way. It's also just nice, I think, to get information in a couple of different ways. So you can read it, you can watch a video, listen to a podcast.
I'm so glad you guys have my book; that makes me happy. I think you can get it internationally, like from Amazon. I know at least in Europe and India they can get my books. I don't know internationally where else, but I also have this fantasy of getting my book published in lots of different languages. Oh yeah, and libraries, that's also another good way to get it.
Okay, so it's 2:05. I'm going to go ahead and get started. I'm going to welcome everybody that is joining me. Thank you so much for being here. This is the first inaugural summer book club meeting, and it's going to be pretty casual. The idea is just to have a little bit of fun while we also maybe learn or refresh our memory. It gives me a chance also to just talk about some of the newer things that have come out since I published the book.
So without further ado, I'll dive in. We're really talking today about the contents that are in Chapter 3 and Chapter 4 in the book. Chapter 3 is "The Chain Reaction That Causes Fibromyalgia," and Chapter 4 is "Blocking the Fibromyalgia Chain Reaction."
The idea is if we can understand the science of what is happening in our body, then we are better able to treat it. I think this is where fibromyalgia treatment has really fallen down. We're understanding more about what is happening in the fibromyalgia body, but we still haven't— that knowledge hasn't really trickled down to the actual frontline doctors that are working with patients.
Because of that, patients find themselves in this place where they're having to sort of search out information for themselves. I definitely remember when I was first diagnosed, which is gosh, 24 years ago now. I remember I was diagnosed by a chiropractor, and then I had like no helpful information from any Western doctor that I approached. There wasn't really any information in my medical school textbooks, so I was really left to fend for myself as far as figuring out what the heck was going on in my body and what I could do to treat it.
I read every book that was available in the bookstore. This was just kind of the early stage of the internet; we didn't have as much information. It was not as useful as it is now, so I was just kind of bumbling around. It took me about a year to find things that actually started to really help. It took me about a year to find things like myofascial release and to figure out that some dietary sensitivities were contributing to my inflammation and pain, and to figure out that I needed to work on improving my sleep, etc., etc.
What makes me really sad is that, you know, 20 plus years later, I think so many patients still find themselves in that role where they kind of end up having to be their own doctor, so to speak, because their doctors don't know enough about fibromyalgia. That is why I wrote this book, actually, because I was like, you know, if people have to be their own doctors, at least they need to be informed.
Yeah, they're going to know more than their doctors about fibromyalgia, but for whatever reason, that seems to be the way that it is with this illness. It makes me angry, but if I focus too much on that, I get very non-productive. So I just have to kind of channel my rage and be like, okay, I'm just going to hope everybody understands what's going on in their own body so that they can kind of try to get the best help for themselves.
As I learn more about what was happening in fibromyalgia, the idea of kind of seeing it as a chain reaction was really helpful for me to figure out like, well, why is it that my muscles hurt so much? Or why do I feel so unrested when I wake up in the morning? How does this tie in with why my muscles are tight all the time? It seemed like all these different, disparate parts of my body were going haywire, and that is confusing in and of itself.
But once I could sort of visualize it or understand it as a chain reaction, for me at least, it became an aha moment. Like, oh my God, okay, now I really understand what's happening. Then, okay, I can treat it by intervening at various different parts of the chain reaction. That's kind of the way I have outlined it.
As I've talked more about it since I wrote the book, one kind of visual that has come for me as I try to describe what's happening in our body is—so what we think happens is that in fibromyalgia, some triggering events, whether it's a trauma, a physical trauma, an emotional trauma, an infection, a major illness, a major surgery, something happens that triggers the nervous system, particularly the hypothalamus and the amygdala, the parts of our brain that regulate the stress response in our body.
Something happens that causes those areas of the brain to turn on, and they don't turn off. Because they're on all the time, we have this constant hyperactive stress response activity, and that is sort of the trigger for all the downstream effects. Scientifically, we talk about the sympathetic nervous system, which is also kind of the fight-or-flight nervous system, and then we talk about the parasympathetic or the rest-and-digest nervous system.
These are parts of the autonomic or automatic nervous system, and that's kind of the primal, the animal part of our brain that regulates things like digestion and sleep and body temperature—all those kind of basic things that happen, and we don't think about it. We don't think about our heart pumping, but it just does, right?
So it's the autonomic nervous system that is regulating the balance of that part of our nervous system, the really primal part. In fibromyalgia, that balance is off. As I thought about it, I was like, well, how—what's a good visual for it? I'm a big cat person, so I think the perfect visual for kind of the flight response, the fight-or-flight response, is a cat that has seen like a dog or another cat.
You know, they arch their back, they might hiss, all their hair is standing up on end, every muscle is tight, their eyes are dilated. I'm sure their heart is pumping because they're totally on alert, right? Like, danger! Oh my God, there's a big dog right there! Danger! That is the fight-or-flight nervous system, and that is a totally normal and helpful part of how animals exist.
We need to know—we need to be able to run away from or fight off danger. Like that cat that is all hissed up is primed to run away from the dog or attack the dog, right? So that's good. Then, as soon as the dog passes, the cat, and they do this really quickly, they go back to like their normal state really quickly.
Like my cat will do that. All activated, 10 minutes later, I'll see him, he's like sound asleep on the couch, laying on his back, no cares in the world. I'm like, wow! Fight-or-flight nervous system and rest-and-digest.
So he very quickly goes back and forth, and the nervous system totally should do that. We normally should do that. As soon as the danger passes, we go back. In fibromyalgia, we are constantly the cat that is primed for danger all the time, including while we're sleeping, including while we're eating, without our conscious control.
Totally not able—we can't control it consciously; that is happening all the time. In the short term, we can do that. Long term, it causes a lot of health issues. You can imagine that a cat that is spooked like that is not going to be able to get into deep sleep. Well, not until they go back into the rest-and-digest mode.
But let's say that cat is stuck in that mode; they're not going to be able to go back and get some sleep, right? Not really interested in food, not really going to eat, digestion's not going to be working well, heart's going to be pounding fast. You know, not going to be able to focus or concentrate on anything.
But those muscles eventually will get really tired of being tight like that. It's just sort of a quick visual that somehow worked for me to think about. In fibromyalgia, our nervous system has gotten spooked, and it's totally in that fight-or-flight mode. Unlike normally, where somebody without fibromyalgia, their nervous system goes back to normal, we just are stuck there.
If we can figure out ultimately a way to get our nervous system unstuck, whether it's through deep brain stimulation or some other future modality, that is actually where I think we could have a cure for fibromyalgia. That's what's kind of exciting to me. If we know the actual trigger, like where the problem is starting, that is potentially where we would find a cure.
We don't have that now, so what we have to do is work on trying to lessen the downstream effects. That's why I kind of titled the chapters like "The Chain Reaction That Causes Fibromyalgia" and then "Blocking the Chain Reaction," because at each step, we need to try to intervene, if that makes sense.
So, you know, the first thing that being in the fight-or-flight nervous system all the time affects is really sleep. That is why most of us get really not restful sleep, not deep sleep. I think I describe it in the book as sleeping with one eye open. That was the thing that I really noticed when I first developed fibromyalgia.
It was like all of a sudden, no matter how much I slept, no matter how long I slept, I didn't feel rested. It was like as if I almost felt worse after I slept. I woke up feeling achy, and I felt like I'd been running a marathon all night, and I was exhausted.
I think that was the part that really felt so like I knew something was wrong; that wasn't normal. Previously, I had been able to sleep. I mean, it wasn't like an amazing sleeper; I had some issues with insomnia before, but it was like that was a very distinct change.
If you're not getting deep sleep, it causes a whole host of problems. The biggest one, the obvious one, is fatigue. The next is brain fog. If you haven't slept well even a few nights, like if you don't sleep well for a few nights, your brain is going to be foggy.
What I try to do for people that don't have fibromyalgia and are trying to understand what it feels like, I say, okay, remember the last time you were really jet-lagged? Like, let's say you flew to Japan, you've been up for like 36 hours. Maybe you slept a little bit on the plane, but you get there, and your body feels so discombobulated, and you're achy, and you've been sitting in the chair, and it's uncomfortable, and your brain is just super fuzzy.
But you feel kind of wired and tired at the same time. I mean, it's not a perfect analogy, but at least it kind of gets people like, oh yeah, I do feel pretty terrible when I'm jet-lagged like that. Then it's like, okay, yeah, that's how we feel like that all the time.
Plus, then there are all these additional things. The more we can kind of help people understand—people that don't have fibromyalgia, whether it's our doctors or family or whomever, I think the more kind of visuals or analogies we use, the better we can be understood and heard and seen.
I'm just kind of sharing with you some of the visuals that have worked for me, and I've definitely used these as I talk with patients and as I talk with other doctors, and it seems to help. That's how I think humans really absorb information, is kind of understanding things like that.
Oh yeah, also being a new parent—that's another thing. If you have an infant, you know, if you have an infant and they're six weeks old and you haven't slept hardly at all, like, oh my gosh, yeah, that also is a really good analogy for people to understand.
So, the chain reaction switch has been flipped in the brain, turning us constantly to the fight-or-flight mode. That interferes with deep sleep, so we're fatigued, we're foggy, and we're inflamed. Studies have been done—lots of different interesting studies. Sleep deprivation causes inflammation levels in the body to go up, and it actually increases muscle pain.
So just by being sleep deprived, I mean, if you're healthy but you're jet-lagged, you haven't slept in 36 hours, you're going to feel more achy. Your body's going to be more inflamed, and you actually have higher levels of inflammation in your body. So we know that that whole pathway is happening in fibromyalgia.
Then the other thing that happens when you're activated in that fight-or-flight mode is that our muscles are tightened. That is because we are ready to fight or flee. The other thing I remember really noticing that was abnormal or different in my body once I developed fibromyalgia was I became really aware about a hundred times a day that I was clenching my muscles.
I was clenching my jaw, or I was clenching my stomach muscles, or my pelvis, or my butt muscles, or my legs. I remember being like, why am I clenching? I don't have any reason to be clenching. Why am I clenching? Then I tell myself, okay, relax. Then 20 minutes later, I'd be like, oh yep, I'm doing it again.
So we're doing it all the time, and it's not just an observation; it's not just like we feel that way. Our muscles actually are more tense, and this is kind of an update from what I wrote about in the book. I wrote about in "The Chain Reaction," I think it's in Chapter 3, about how studies have been done where they looked at fibromyalgia patient muscles and healthy controls.
They did some pressure measurements, so they used those same kind of pressure gauge needles you use to check the air pressure in your tire. They did that into fibromyalgia muscles and then to healthy controls. Some of what I put in the book was just some very early data where they'd been looking at that, and there were a couple of small studies that had been published saying, yeah, there's higher levels of pressure, which is interesting.
Last year, this really interesting, much bigger study came out where they looked at the same kind of thing, but they looked at a lot more people. They looked at people with fibromyalgia, people with rheumatoid arthritis, and healthy controls. Healthy controls and rheumatoid arthritis patients did not have elevated pressure in their muscles.
Fibromyalgia patients, however, had levels of pressure in their muscles that were high enough that they were almost to the point where we would be concerned about something called compartment syndrome. That is considered like a surgical emergency, where if there's swelling within a compartment of muscle fascia in your leg, if there's so much pressure in there that it's going to damage the muscle cells themselves or the tissue themselves, that's called compartment syndrome, and it's considered a surgical emergency.
You have to get in there, open it, and drain it. We weren't quite at that level, but we were almost, and I was like, oh my God! Our muscles are so tight, we're almost at a surgical emergency level! No wonder our muscles hurt! Come on!
To me, I was like, oh my God, this article should be on the front page! I mean, nothing—like I guarantee if you go to your doctor and be like, hey, did you hear about that study where they showed really high pressures in fibromyalgia patient muscles? For whatever reason, this information does not get out there.
I kind of feel like I guess maybe that's my job now, is to make sure it gets out there. But now you know, so we have really tight muscles, and those tight muscles are really unhappy. They're painful, they're inflamed, and it's not just the muscles; it's also the connective tissue or the fascia that surrounds those muscles and penetrates through the muscles.
So we have myofascial inflammation, and that is very painful. That makes us really exquisitely tender. This is why, gosh, I'm talking a lot about cats. I am a crazy cat lady, I guess. Now you get divorced, and I just need to get 10 cats, and you know, there you go. Anyway, I digress.
So a cat jumps on your lap, and you're like, oh, that hurts! I remember being like, how come it doesn't hurt other people when cats jump on them? Oh, I guess it's because my muscles are so sore. You know, we're so tender, and part of why we're so tender is because of that myofascial inflammation.
Interestingly, the fascia that surrounds our muscles is actually much more sensitive to pain than the muscle itself. The fascia has both pain-sensing nerves and sympathetic or fight-or-flight system nerves. That is another update since publication. There has been a lot more interest in kind of understanding the fascia.
I've always been interested in it ever since I figured out, like, wow, there's something going on in the fascia and fibromyalgia. But the scientific community, starting in like the mid-2000s, started to really look at the fascia. There are some amazing scientists, mostly in Europe, like in Italy. There's a big group of anatomy scientists that are looking at the fascia.
What they found is that the fascia is really rich in both pain-sensing nerves and sympathetic system nerves. They think that is because it's actually the fascia that contracts in response to danger. The best way to think about this is, you know, if you think about somebody doing a heroic act in a time of danger, like for example, somebody's kid gets stuck under a heavy car or something, and some person that weighs 100 pounds is able to lift the car off the kid because of this adrenaline rush.
What they think causes that additional strength in that moment is a huge amount of fight-or-flight nerve signaling that causes the fascia to contract really strongly. We know that the fascia contracts in response to fight-or-flight signaling, but do you see how that might be a problem if it's happening all the time?
So our fascia is really tight, it's angry, it's inflamed, and we're really prone to developing trigger points, which are kind of inflamed knots of muscle and fascia cells. This is why, as we start to think about the chain reaction—and this is only part of the chain reaction. I don't have time to cover it all, but the parts that are sort of relevant and there have been updates is what I'm talking about.
As we start to think about it as a chain reaction, you can see how different interventions could help, right? Myofascial release or things that work on lessening the tension in the myofascial system, particularly in the fascia. Oh yeah, I can see how that would help reduce pain.
Okay, yeah, so getting better sleep, finding ways to get deep sleep, okay, yeah, that's going to help fatigue and fog. Then anything that we can do to kind of help shift the balance of the fight-or-flight nervous system and the rest-and-digest nervous system.
As I said, we're in fibromyalgia; we're constantly in the fight-or-flight mode. But there are things that we can do to actually help temporarily push us into rest and digest. We haven't found a way to keep us permanently back into the normal state, which is rest and digest most of the time, in fight or flight only with danger.
We're like all the time here, but sometimes in rest and digest. The more we can push ourselves into that rest-and-digest mode, the better we feel. That is why things like yoga and meditation and deep breathing and cranial electrical stimulation and all the things that I talk about—I think it's in Chapter 6, no, 8 and 9.
In Chapter 8 and 9, I'm talking about ways that we can help ourselves. We can harness things that we can do to bring us into that mode as much as we can. It's kind of like hitting the snooze button. We can kind of get out of the fight-or-flight mode for a little bit. The more that we can do that, the better we feel.
This is why even doing like five minutes of deep breathing in a day might really help because your nervous system is going to be better off for that, that the rest of that day or, you know, even for a few hours.
Oh, hello! It's Pipe Support Fibromyalgia Network! So, yeah, I think that kind of covers the big parts of the chain reaction and kind of the updates. But just in the spirit of completeness, I just wanted to say that kind of the other aspects and what kind of the more fine-tuning parts of treating fibromyalgia are that in that chain reaction, other things that happen include like affecting our hormones.
We have a lot of cortisol that's being pumped out for a period of time until our adrenals burn out, and then we've got adrenal burnout that needs to be addressed. That cortisol-adrenal burnout issue kind of affects how our thyroid functions, so we're more prone to hypothyroidism. If we do have hypothyroidism, we need to be treated a little bit differently.
So sort of hormone imbalances, inflammation, and then leaky gut. Leaky gut is kind of the other big piece because when we're in the fight-or-flight mode, our gut becomes more leaky. This happens in humans; it happens in animals. Lab rats, if they are stressed, their gut becomes more porous.
Then more particles are getting through that can generate an inflammatory reaction. I would say that maybe is one other update. When I was writing this book, the concept of leaky gut was totally not understood by the conventional Western docs. I mean, that was just like a—if you said that, they were just like, what are you talking about?
Now it actually is much more accepted. In fact, I did a CME, like continuing medical education class recently, and it was just a standard Western medicine class. It was led by a gastroenterologist, and he was talking about leaky gut. I was like, what? Like, wow! Nobody in the audience was looking like he had grown a third head or something.
So it is starting to be more accepted. It's not like every doc is going to be aware of it, but if the GI doctors are talking about it in a CME course, you know, I was totally blown away. So I think some of those concepts are becoming more accepted in mainstream medicine.
Of course, naturopaths have known about it for decades, but I digress. So that's kind of the other area. Digestion, inflammation, hormone imbalances—those are kind of the other areas that we need to work on. But I think those are—I view those as a little bit more like fine-tuning.
The prime things that we really need to focus on, particularly when we're thinking about, you know, the earlier in that chain reaction you can intervene, the better. The more different streams you're going to be able to affect, right? Like as a post, if you're just working over here, like the earlier you can stop things—if you think about something like a riverbed, right?
The earlier in the river you can get things addressed, the more branches you're going to be able to affect. So I think trying to remember like, okay, the best thing I can do for myself is every day try to do something that is going to activate my rest-and-digest nervous system. Every day, I'm going to try to work on sleep. I'm going to try to work on maybe doing a little gentle stretching so my fascia isn't so tight.
You know, those are like the basics. That's like the bread and butter, so to speak. Everything else is useful and important, but I think we need to really build that foundation first. That is why I wrote the book kind of like in steps: step one, step two. You know, like step one is rest, step two is repair.
Those are really focusing on the aspects that I'm talking about. It doesn't mean you have to do it that way, but I just thought that that would be useful because at least—and I'm almost done. We're almost going to get to questions here.
But I do recall when I was finally starting to figure out not exactly what was going on in my body, but that there was—I was finding I was stumbling onto things that helped me. As I was trying to think about them, it was really easy to get super overwhelmed, particularly around things like diet.
You know, I was like, oh my God, do I have to do like macrobiotic or vegan or only this or only that? You know, like I just—it was so overwhelming, particularly when your brain is foggy, and you're just trying to figure out what I can do to help myself. At a certain point, I was like, wait, we just need to simplify it so that we can just be like, I'm just going to work on sleep.
So that is the way that I—that's why I wrote the book that way. Some people might not like that, but it worked for my brain, and I was hoping it would work for other people's brains.
So with that, I think I've babbled on long enough about the chain reaction. I'm wondering if there are some questions that people have come up. Oh, you guys, thank you so much for all your lovely comments and congratulating me on my mouse study publication. Thank you!
Oh yeah, I should probably mention that as one update. I didn't talk about it in the book because we didn't know about it back then, but the end of this chain reaction is that our nervous system gets hypersensitive to pain. We didn't really realize what was the step that kind of caused that.
We knew all these things happened, and then at the end, there was central nervous system hypersensitivity. What the mouse antibody study showed really showed us that the immune system is involved in kind of that last final step. I think we're still working out a lot of the details, but you know, in the book, I just kind of say that the nervous system is overwhelmed by all the pain signals that are coming into it, and that is kind of what maybe triggers the central nervous system hypersensitivity.
But it turns out that there are some steps in between that include the immune system and its role. So that part is very interesting, and if you don't know what I'm talking about, there is another video I think it was like two or three weeks ago I released about the mouse antibody study, and there's a link to it.
Basically, they showed that in healthy mice, if you give them antibodies from fibromyalgia patients, they developed central sensitization. There was some clear evidence that there were antibodies and immune system involvement in developing that hypersensitivity.
So I think it is really, really interesting, and actually, it's really interesting times. Hopefully, we'll get some more studies done. Okay, any questions or comments? Let's see.
Oh yes, and I love—thank you, Mary Healy! We are fibro fierce altogether; I totally agree. Let's see, Desiree is a puff. Can you like pin a comment? I don't know if that's—or a question. Well, I see one here. I'm going to jump into it.
Vagus nerve stimulation—that is a very good question. I just actually read a study about vagus nerve stimulation for fibromyalgia. Basically, the concept of that is the vagus nerve is sort of the highway that runs the rest-and-digest mode.
The sympathetic nervous system comes out of our brain and spinal cord, and kind of at the top and the bottom, it goes—or actually, it goes kind of through our center vertebrae. So there are sort of certain nerves that run the sympathetic nervous system, and then there are other nerves that run the rest-and-digest, and the vagus nerve is the main highway for that.
The idea is if you can stimulate the vagus nerve to have more activity, does that improve—gives us more time in the rest-and-digest mode? Will that improve our symptoms? We know about doing vagus nerve stimulation; it's been used for a long time for treatment of depression. It definitely has some positive mood effects, so we've got some good data there.
What we're finding is if you stimulate the vagus nerve, it definitely also helps reduce inflammation. So it has an anti-inflammatory effect, seems to have a mood-boosting effect. Interestingly, the early studies are not showing a lot of pain relief, and I don't think they know exactly why that is.
It's possible that just the way they're stimulating it is not very elegant. The way they're stimulating it is really just like they either do an implant in the vagus nerve where it runs in your neck, and that's like a surgical procedure, or there's some external things that stimulate it. But it's not like a very—it's just sort of like an electrical—it's just trying to kind of add more electrical activity.
So it's not like they can really like dial in or fine-tune it, and so maybe they'll figure out new, better ways to do it. But at this point, it's really, you know, to get a surgery to have something implanted in your neck to get like some improvement in inflammation and maybe some improvement in mood, it doesn't seem to help a lot with sleep or pain.
That's all really—we—I mean, it's interesting. I don't think they quite know exactly why that is, but I am going to do—I was going to do a research update video about this article because I thought it was kind of interesting. So that is a great question.
Then the final thing about that I'll say is I had a patient who had fibromyalgia and then also had really bad depression. She had a vagus nerve implant done for the depression piece because that's what it's like FDA approved for right now. It helped somewhat with her depression; it didn't really give her any benefit for the fibromyalgia piece.
I don't know; it doesn't seem like maybe the way we're doing it is the right way for fibromyalgia, but maybe it's got some potential down the road. Oh look, okay, I think I've now—I see Desiree has put some little comments. Beautiful!
Okay, so there's a question about stellate ganglion block. So that is basically blocking part of the sympathetic nervous system, and does that help with fibromyalgia? They also are using it for PTSD. That is showing some benefit, again, not as much for pain, more for kind of the hypervigilance component.
I think, again, if they figure out different ways to do it, it could work. Right now, they basically are kind of just going in and electrically—they're going into one part of the sympathetic nervous system and kind of killing it off, honestly.
It seems like maybe that gives some localized benefit, but then the sympathetic nervous system really just finds another way to kind of route around that. Thus far, not hugely helpful, but maybe down the road.
Okay, excessive heart palpitations associated with anxiety, neck pain, and stiffness. Well, first, almost everybody with fibromyalgia has anxiety, neck pain, and some amount of stiffness. We vary kind of in where we feel stiff.
Those are all really common, and I think a lot of us experience noticing kind of fast heart rate. That's part—if you think about all the activation of the sympathetic nervous system, that's all part of fibromyalgia. The heart palpitations, meaning like either an irregular rate or having times where it goes up really, really high, that is not so much related to fibromyalgia.
That's probably related more to like an underlying other issue with the heart's electrical stimulation. But that is certainly being triggered to go off more frequently because you have all this sympathetic nervous system signaling into the heart.
So the overlap with myofascial trigger points—so everybody, whether you have fibromyalgia or not, can develop a myofascial trigger point. Again, that's like a painful knot of tissue. One of the more common areas, when I give talks to doctors, I always say like, hey, if you want to feel a trigger point, if you're right-handed, go right up here, so kind of right in your trapezius, right above the edge of your shoulder blade, right there.
If anybody that's like our mousing muscle or devising muscle, anybody that does a lot of that and is not using very good ergonomics—which of course, nobody is using perfect ergonomics—almost everybody will have a tender point there. They can feel like just a little bunching of hard tissue, or sometimes it even feels more like a little pea. It's very painful when you press on it, and when you press on it, sometimes you'll get pain that kind of radiates out of it.
Healthy people that don't have fibromyalgia will have between zero and two trigger points when they've done studies. With fibromyalgia, we tend to have between 11 and 20. I mean, our muscles tend to be really kind of riddled with them.
We're just really prone to getting them, and that is why we have to be sort of extra vigilant, I think, about good ergonomics. Because any muscle that is sort of being used, like being strained, any muscle that's being strained, being overused, or used not in the right direction—the direction that doesn't like to go in—is going to develop a trigger point.
The best ways to treat trigger points are trigger point injections, where they use lidocaine, find the trigger point, inject it in there. It seems like the actual stimulation of the needle somehow sort of untangles or kind of gives that bunched-up part of the muscle a different signal, and it can help it kind of to unravel.
You can do it with lidocaine; you can do it with just—they call it dry needling, which I don't like because that's painful. But basically, they're just sticking a thin needle, like an acupuncture needle, just kind of sticking it in your muscle. I don't like that; I prefer the lidocaine.
You can also treat it with just sustained pressure, so either you doing it or someone else doing it, or they have like, you know, a theracane, something where you're kind of having sustained pressure for four or five minutes at different angles. We can actually manually break them up. Myofascial release is really helpful for that, so those are important to address.
Then I think, let's see, other questions. I can't really answer specific medical-type questions, unfortunately, like about individual stuff. TENS machines can help with that for sure.
So the question about neuroplasticity is a great question. The concept of neuroplasticity is that our nervous system, meaning our brain, spinal cord, the nerves that go out to our periphery, that they have some ability to change. They can be plastic; they can re-route and re-figure.
The idea is, let's say our nervous system is ramped up; it's in this state of central sensitization. Maybe that's not necessarily a permanent state. Maybe there are things that we can do, whether it's through cognitive things, thinking about things differently, moving our body differently, giving different stimulation to the nervous system, whether it's through electricity or whatnot.
The concept is that our nervous system is not fixed. It's not like, you know, it's always going to be like this; there's no possibility for change. I think that that does give me some hope. That certainly is hopeful, particularly for those of us that are feeling like, oh my God, my nervous system is on fire.
Is it always going to be like this? No, there definitely are ways that we can modify it. But I will say, I know I sound like I'm shilling myofascial release, but I make no money from myofascial release. I have found for me that when I get a lot of myofascial release, it does seem like it is shifting not just my tissue, like my muscles; it feels like it shifts my nervous system.
It feels like it overall ramps down my pain hypersensitivity. So perhaps that is one way that we can communicate back up to our nervous system in a way that's positive. In fibromyalgia, it's actually through our fascia because if you think about it, the fascia is rich with pain-sensing nerves.
It's rich with fight-or-flight nerves. Well, those are not one-way nerves; they go down and they go back up to the nervous system. So how can we signal back up to the nervous system like, hey, no need to be hypersensitive; everything's okay down here?
It's stuff like that that I think about, like, okay, that would make sense. I know when I'm getting a lot of myofascial release, my overall level of pain is much better. I feel much more just quieted down; it's like my nervous system is quieted down.
So the challenge is not everybody can access myofascial release, right? And so Mary has a good question here. She says, I don't have a John Barnes-trained myofascial release therapist near me. Ideas?
So the form of myofascial release that I have experience with personally is the one created by John Barnes, and his website, if you want to learn more about him and his approach, is myofascialrelease.com. I'll put that in the description, and then you can look for therapists near you at MFRtherapist.com.
Okay, well, let's say you don't have anybody near you. Another option is finding somebody that does a different style of myofascial release or a different type of therapy that also addresses the fascia. So Rolfing is a similar but slightly different way to address the fascia.
Osteopathic manipulative therapy—so a doctor that is a DO rather than an MD, they often will have done some training in osteopathic manipulative therapy, which is very similar to myofascial release. Some chiropractors do some things that affect the fascia; some physical therapists do some things that affect the fascia.
So trying to find somebody that does something with the fascia, but not in a way that hurts you, because some personal trainers will sometimes say, hey, I do myofascial release—like get on this roller and roll this really painful part out. Sometimes it's like too much, and I'm like, no, no, that's not.
So if it feels wrong to your nervous system, don't do it. But sometimes we have to open up to like, okay, let's try different approaches, different ways to address the fascia. The other thing is doing self-myofascial release.
There was actually a study done, and that is an update that I didn't put in here. It came out a few years ago, a study looking at self-myofascial release and how it did for fibromyalgia pain, and it had pretty good results. Not quite as good as myofascial release done by a practitioner, but really good results.
The concept is basically using stretches at home or using tools. Like I did a video on the cranial cradle, which I should have next to me, but it's the little tool that you can kind of use to get in different positions to stretch.
So there are ways and tools that you can use to do it for yourself. No, it's not perfect, but it definitely can give you a lot of benefit. If you're somebody that does things pretty religiously—if you're really consistent—you can get a lot of results with it.
The other idea—and this really only works if you are independently wealthy, which, you know, not a lot of us are these days—but there are places like John Barnes has these retreat centers where you can go and get myofascial release for a week or two. If you can get it covered by your insurance, it might be doable.
So maybe trying to go and get some intensives, they call it, and then coming back. If you do some myofascial release and then come back, you can do the stretches yourself; you can kind of continue the benefit. But yeah, that is a big challenge if you can't find somebody to do it.
But there are ways to take care of yourself, and I do have—if you go to my website, DrGeneva, and go to the store part, I list all the different tools and stuff I use for myofascial release, so that might be a good option.
Yeah, scale totally! Gail is actually one of those people, if I might share, that is very good about finding stuff that works for her and doing it religiously and getting a lot of benefit. Like she has done amazing stuff for herself with self-myofascial release. Hopefully, I didn't share too much, Gail, but you're really quite good at that.
Okay, so we've got around time for a couple more questions. Is a profound drug-like wooziness part of fibro? Yeah, I would say that's kind of like the fibro fog at its worst. If you aren't sleeping well and you wake up and you're kind of foggy, and then it just sort of doesn't get better.
So that kind of woozy, foggy—I mean, that's, I would say, like the most severe end of fibro fog. The complicating factor is, though, some of the sleep medicines that we use to help get sleep at night can still be in our system in the morning and kind of contribute to this like grogginess haze.
Some of the bigger offenders are things like trazodone, amitriptyline—some of those type of medicines. They really, at least when I've tried them, they really are in my system until it seems like noon the next day.
So trying to adjust dosages or take them earlier—so trying to figure out, like, is there any medication that is making this worse? Some component of it is certainly fibro fog. The other thing that can cause that wooziness is high inflammation levels.
So are you eating something that's making you feel terrible? If you're eating things that are toxic or causing a lot of inflammation in your body, one way that you can feel that is sort of in this woozy, like just terribleness.
So I would say look for things that might be generating inflammation. Look to see if there's any meds that are making things worse. But know that some underlying amount of that is fibro fog.
Then the nightly alertness that that question refers to, I often see that as part of adrenal burnout, where during the day our adrenals aren't doing what they should, so we don't have enough cortisol. So we're like really tired, and then at night they kick on, which is not when they're—it's like they're in the opposite, the wrong schedule.
Then at night, they kick on, giving us insomnia, can't go to sleep, and then the cycle kind of continues. So it might be if you're noticing that type of pattern, that is when I would maybe look at adrenal burnout.
A lot of naturopaths and kind of alternative providers are familiar with that. Adrenal burnout is still a concept that Western docs do not—that has not come into the Western medicine understanding.
Leaky gut! Alright, let's see. We've got time for one or two more questions. Oh, this is a really good one. Some doctors explain fibro as a low threshold of pain. Is it true?
Well, yes, it is true, but it is a very incomplete and inadequate description. What they're talking about is actually the central pain hypersensitivity or the sensitization of our central nervous system, meaning it takes a lot less stimulus, a lot less input to generate a pain signal in the brain.
We know this from imaging studies in fibromyalgia. We know this in lots of different ways. This is like the most well-documented scientific abnormality in fibromyalgia is that our brain and spine, our central nervous system, are hypersensitized to pain.
So one way to describe that is that we have a lower threshold for pain, meaning it takes less pressure or less input to cause pain. It's hard, though, because that is like, as I said, that's sort of the very end of the chain reaction.
If a doctor only understands fibromyalgia as that, they have a very limited view of it. Honestly, what most doctors that aren't very enlightened about fibromyalgia, at least they know that that happens in fibromyalgia.
That is the part that central nervous system hypersensitivity is exactly what the drugs that are available for fibromyalgia that are FDA approved—that's what they target. Cymbalta, Lyrica, Savella, which is another antidepressant similar to Cymbalta, those are the three FDA-approved medications for fibromyalgia, and they all target that.
They're designed to help make it so that our nervous system isn't quite as sensitive to painful stimuli, and that is helpful. But it's certainly—it's like treating one final piece, but it's not—it's like ignoring all these other things that are really generating so much of the symptoms.
If you're only treating that piece, you're not addressing the pain, the fog, you're not addressing the sleep, the fatigue, the hormone issues, the leaky gut, not addressing like the painful, you know, trigger points, the tight fascia. It's just such an inadequate and incomplete approach.
But you know, it's better than at least they understand that, and I will say that that is progress. I'm very glad, and that has also probably—and I'll end on this because it's kind of a good—it's a happy note.
I would say one of the amazing things that has happened since I wrote the book, really in 2015, it was published in 2016. Since then, there has really been a shift. Most doctors—it's much more rare these days to find a doctor that doesn't believe in fibromyalgia. They at least believe it exists.
Now, are they like a total jerk about it? Do they think somebody wrote that like the rheumatologist said, yeah, you have fibro, but you know, I don't really have anything to teach you or talk about it? You know, like they're still—that maybe doctors don't know how to treat it, and they might still have some negative feelings about it because it still has this stigma.
But there's so much scientific evidence now, and even so much more than since I wrote the book, that you really can't be a fibromyalgia denier anymore. That is progress, and it's sad that like that's the progress, and I'm like, yay, great!
What? It's a lot different than when I was diagnosed, and people that are, you know, from my era or older totally will understand. Like, right? At least doctors believe it is real now, and more enlightened doctors actually even will then start to talk about, okay, well, there's pain, you know, but there's this—let's work on your fatigue.
You know, at least there is more enlightenment. We're getting fewer doctors saying it's all in your head, and that's progress. But we still have so much room to go, and there's such a lack of understanding, I think, of the myofascial involvement in fibromyalgia.
There's a lack of understanding of the sleep issues in fibromyalgia, the hormone issues, and this is where we, as patients, have to unfortunately be in the role of bringing some information to our doctors.
So my final shameless plug is that the last part of the fibro manual I wrote is kind of an appendix—something that you could maybe share with your doctor that would help them to be able to look at the studies. Doctors like to look at evidence that would help them understand why they might need to work with you on sleep or why they might need to work with you on myofascial release or hormones or whatever.
You know, it's sad, and it's infuriating that we're in that position, but at the very least, I feel like at least now we can arm ourselves both with some knowledge and also the piece that I really want to make sure that each of you know here is that just existing and having fibromyalgia, just surviving, makes us fibro fierce.
It sucks; fibromyalgia just sucks. There's not any two ways about it; it just does. But if you are able to persist and exist and have the inspiration and know that there are other people out there just like everybody in the chat here and me, we know what you're going through. We believe it's real; we're here to support each other.
Also know that it's possible to feel better; it's possible to get better. That's sort of the fierceness that I'm kind of envisioning, is both the concept of like, I have the knowledge that can help me, and I have the inspiration to be able to fight through this, to be able to enact or fight for those things that I know will help me or I think will help me.
That's kind of my mission. I feel like, you know, my mission now is part of why I closed the Frida Center was so that I could focus more on trying to educate patients and then hopefully educate doctors so that less and less of us are in that position of having to educate our own doctors.
But for now, oh, I wanted it to be an hour, and it's like 59 minutes and 52 seconds, so nailed it! If I did not get to your question or comment, I apologize. I really thank you all for being here and for being patient with me as we figure this out.
We've got five more of these coming up throughout the summer, and the last one is going to be an ask me anything—except for personal medical advice, so that can be fun. But it's also going to be just covering different topics, so stay tuned.
Both on my Facebook page is a good way to be kept up to date. If you want to be on the email mailing list, it's at DrGeneva. That's also a good way to be notified of upcoming things like this, and we're going to do other random fun things this summer.
I really appreciate you all coming and all your kind comments, and I think with that, I'm going to sign off, say thank you, and stay fierce, everybody! See you next time!