Show Notes

In a world where complex health conditions often leave people feeling isolated and misunderstood, this episode offers a beacon of hope. Dive into the conversation that uncovers the intricate connections between Fibromyalgia, Chronic Fatigue Syndrome (CFS), Postural Orthostatic Tachycardia Syndrome (POTS), and ADHD.

In this episode, Dan and Dr. Michael Lenz dive deep into how these conditions intersect and impact daily life. If you’ve been struggling with unexplained pain, fatigue, or cognitive challenges, you’re not alone. This episode delves into the reality of living with these conditions, highlighting real-world experiences and the science behind them.

Discover practical advice on navigating these intertwined health challenges, including strategies for managing symptoms and enhancing quality of life. Gain a deeper understanding of how your brain and nervous system might be affecting your health and how you can find relief through holistic approaches.

Whether you’re a patient seeking answers, a caregiver, or just curious about these conditions, this episode offers a compassionate and informative perspective. It’s about connecting the dots, finding validation, and uncovering the path to a better, more manageable life. Join the conversation and explore how these complex conditions are more connected than you might think.

Timestamps

Links

You can learn more about Dr Michael Lenz on his website.

Here is a link to the ANS REWIRE program.  

Transcript

Dan Neuffer:
It's always wonderful to meet physicians that specialize in treating patients with fibromyalgia, ME, CFS, POTS or related illness. It takes a certain type of person to commit to doing the work, which is far from straightforward. Dr. Michael Lenz is clearly passionate about helping this patient community, and I appreciate his conservative approach with medications and his focus on lifestyle medicine.

He's clearly fueled by the results of his patients and given his background as a pediatrician, it was a great opportunity to speak about supporting children with this condition. His focus on a common comorbidity, ADHD, was also very interesting and we discussed both his experience and treatment approaches.

I hope you enjoy listening as much as I enjoyed speaking with Dr. Lenz, and that it helps you to tweak your recovery approach. Just a short but important message regarding the content of this podcast. The ideas, concepts, and opinions expressed in this recording, website, and associated media and products are intended to be used for educational and information purposes only.

Nothing presented is intended to replace your physician, nor are they a substitute for medical diagnosis, advice, or treatment. This podcast is provided with the understanding that the authors, guests, speakers, and publishers are not rendering medical advice of any kind.

Well, I'm very excited to speak today to Dr. Michael Lenz, the author of Conquering your Fibromyalgia. I always take note when I come across a physician who specializes in helping patients with Fibromyalgia, ME, CFS and POTS and Multiple Chemical Sensitivities, because you know what?

There's probably an easier patient population to deal with. It's not an easy gig, and for someone to dedicate themselves to that is always not worthy. And inevitably they get a wealth of experience. So I'm very pleased and excited to have Dr. Michael Lenz join us on Wisdom From The Other Side today.

Hi Michael thanks for coming on the podcast.

Dr Michael Lenz:
Yeah, well, thanks for inviting me. It's a pleasure to come 12-hour time zone part around the world in this great way to communicate here.

Dan Neuffer:
Absolutely. Often I'm asked to be connecting with people at three in the morning, and that's always a little tricky. So, let's start off with this: you heard my intro on modern medicine. How long do we spend with patients once we have a complex condition that doesn't have a simple script as an answer? It's difficult as a doctor, and many people get frustrated with their doctors or think, 'The doctor can't help me,' or they expect their doctors to be miracle workers, right? It's a tough gig. What made you want to work with fibromyalgia patients?

Dr Michael Lenz:
So, it starts with just wanting to care for people. I first heard of the word 'fibromyalgia' probably in the late 90s or early 2000s, but I never heard a grand rounds on it. That's a teaching conference that doctors throughout the hospital attend to listen to different specialties. I never had a presentation on it. But, looking back, I started seeing patients who had symptoms of this or symptoms of central pain sensitivity syndromes, whether it's IBS, migraines, and I started seeing family histories as I'm a Pediatrician and Internist.

As time went on, I started through self-education and learning, hearing some really good research, like Dr. Daniel Clough from the University of Michigan, looking at central pain and starting to connect and learn more and more. It's a very often hopeless population of people, very frustrated. Several years ago, I wanted to give good explanations for this. It's very precarious when you're first talking about this with a patient because you don't have a lot of confidence in understanding it yourself. You're trying to explain, but I'm somebody who wants to solve mysteries, try to understand things, and I'm very curious and want to learn more.

As I started to see the connections with how the brain processes things and how there are so many other coexisting conditions that can contribute, I wanted to help people. Part of writing the book was because I did not have enough time to explain things. This is an explanation of something that is very atypical. I don't have to spend a lot of time explaining to a patient who has a urinary tract infection how that particular antibiotic works. It kills bacteria; you have bacteria, it's infected, you'll get better in five days. They don't need to know the med school explanation for how the medicine works.

But for this, there are multiple areas involved and so many different things working together, either with synergy or dis-synergy, that can start to unravel. For many people going through this, it's extremely frustrating to live with. I find it the most rewarding group of patients that I work with. When somebody's been living with problems for so long, helping them get better is like conquering. It's often trying to work hard to improve things, and sometimes, like as you get older, if you don't keep exercising, your muscles will atrophy. I just had my 51st birthday yesterday. I know, as I tell my patients, you can't just sit in an office chair and maintain your muscle mass like you're 20 years old. You have to continue to move, and if you don't do those good self-care practices and maintain self-management, people who are more prone to this will start to slip back.

It's much more important for somebody living with this. So, that's just kind of a caring part of my faith, to help those who are often left behind, in the corner. My mother, who passed a year ago from cancer, had a big heart for people. I remember her trying to connect with some family members. When I look back, one of my aunts probably had it, and before she died, she was reading my book. She said, 'I think Aunt Lonnie probably had that.' She was really struggling with those conditions. But back then, they didn't have a name for it, but she often struggled.
When you hear that, it would have been interesting to have had more of a conversation with her when she was younger. But it's just frustrating, and I just want to help people.

Dan Neuffer:
When we have a simple treatment like an antibiotic, and everyone knows how antibiotics work, and the doctor says, 'This is what you need,' and you take it, most folks, when they're not feeling well, are going to swallow that pill. But when you have something that's more complicated, education becomes key. It must be difficult as a doctor to provide that education and fill those gaps. Do you find yourself working with other healthcare professionals, like pain psychologists, or any other folks? How do you think is the best way to address this?

Dr Michael Lenz:
Well, there isn't a lot of—it's hard. There aren't a lot of people who are out there that are easily referred to. I was referring to a program in Spain where they're just talking about education and educating them on how the hyper-aroused central nervous system reduced symptoms by 25%. They did seven two-hour sessions and just talked about the power of education. It'd be nice if I had that. I'm doing this on my own, you know, this is a sort of unusual kind of practice. I'm employed in a hospital system, but I'm having to do this with my resources on my own, trying my best to help as much as I can.

Part of why I wanted to have the book was my first take is my patient in mind, to help them get a kind of an understanding of what's going on and how their brain works. But also their loved one who's hopefully that can understand if their brain doesn't work that way. They're not wired that way to help and understand, and I'm hoping that other physicians can read and have a better understanding about this and similar with the podcast.
I don't have enough time to explain everything and the more extra time you have, that's a challenge. I always say if you want to see me, ask to be the last patient of the day, and hopefully my daughter doesn't have a volleyball game that night. Then I'll give you time; I might spend three, four hours, and I love helping take time, but I have to say, "Okay, let's come back in a couple of weeks. Here's some homework for you to do," and kind of echoing what we talked about before we went on the air, this is an issue that's not a passive problem. Where you just have something you take and it just works. It's a very active, engaged condition that you have to be part of.

One of my chapters in the book is called The Buy-In. You have to kind of buy in that this is real. It's not in your head. Well, not like you're imagining it, but in one sense, your brain is processing things differently, and we don't, and somebody who has a severe migraine, most people understand. A severe migraine, they're not faking it. They're nauseous, their head's pounding, they look miserable, and they understand that that's a real problem, most people would. But people who aren't living with fibromyalgia-type syndromes may question them, think they're just faking it, they're just getting attention. That can be very frustrating, and I think a lot of times just being validated that their experience is real. But also offering hope that we can get better, not just a magical hope. Oh, just here, take this special supplement, and you're going to get better, but it'd be nice to have that education.

So when I started writing a book three, four years ago and then COVID hit, I said, "All right, I got to finish this book. There's nothing else to do." Probably like in Australia, we were locked up. We couldn't even go to a state park here. So I'm like, well, when this is over, I'm not going to want to sit inside and write a book. I want to get out and go for a walk and explore the world. But I thought, all right, I might as well get this book really accelerated and finished to help people learn more. Because there is so much education and I hopefully want to, over time, and I think over time this will be, but unfortunately, like I say in the podcast and the book, that it takes about 17 years for something that's relatively consistently accepted in medicine to be regularly implemented.

Unless you can make a lot of money on it, at least in America. If there's an expensive medical procedure, well then, that often gets accelerated into regular use. But also, there's probably, at least in America, not a huge financial incentive to spend an hour and a half, two hours with a patient to take the time to explain things. And so that's always a challenge. But the cost of lost time, wages, and suffering, putting that in the economic cost of any one of these regional pain syndromes, let alone diffuse pain and fibromyalgia, whether it's migraines, or not, in a couple of weeks, I'm going to have an interview with a pediatric neurologist talking about migraines and talking about the huge lost wages, income, and suffering that just in that alone, let alone severe disability and suffering that people have to go through when it's not adequately treated.

Dan Neuffer:
Yeah, look, I appreciate the take. I mean, most of us don't want to think about that. We just want to get better, and we're thinking about ourselves. But if we can put sometimes these things into a bigger economic cost to the healthcare system, to the country, sometimes it gets more attention. And it's the type of thing we're seeing perhaps with long COVID now. Fibromyalgia, CFS, POTS, Multiple Chemical Sensitivities, it's funny how illnesses are named after the symptoms. Are these really different illnesses, do you think?

Dr Michael Lenz:
It's at the core, it's how the brain and the central nervous system are processing things. And I often use the analogy of the blind man and the elephant. And they're describing an elephant, but there are different parts of it. And, and that's, I look at these, and unfortunately it's often, if you, so much of research is a specialist driven, so there's one area, right? If you're a neurologist, you'd see the migraine. If you're researching cardiovascular and you might think there's maybe a POTS component and, and I, and all of these different aspects.

So it's, to me, as you can probably, if you read part, get the take of my book, I'm gently saying, these are not really a different problem, it's just under the same umbrella. Now, there are some people may who just may have migraines and they have no pain anywhere else in their body. Or they just have IBS, but many will have, under the same umbrella, this central nervous system that's hypersensitive, hyper-aroused.

Dan Neuffer:
And of course, we see how the illness progresses from one to the other. I want to read out a paragraph from your book. It caught my attention. It's not something I tend to focus on very often. It says this: 'At a basic level, ADHD interrupts the brain's ability to filter out extraneous stimuli.' And you talk quite a little, quite a bit about ADHD. It's not something that we tend to focus on a whole lot in this group of illnesses.

I kind of wonder, you know, what led you to start to make this connection with ADHD, and tell us a little bit your thoughts around this.

Dr Michael Lenz:
Well, and I talk about it in the book partly is it isn't something that's as recognized. The interview I'm doing with the pediatric neurologist has seen the same conclusions with this.

And it's, it is part of that more of that hyper-aroused nervous system. And I think when you look at a lot of the symptoms, especially in adult ADHD, often that highly driven perfectionist often very high IQ. And that part of that hyperactive mindset, high energy so I started seeing these connections just like a detective starting to put circumstantial evidence together, and then looking up research, not just an observation, I'll see somebody who has one or the other and seeing a family history, and then looking up the research, looking at what the comorbidities is.

And seeing that these often do go together, I think what used to be lumped together and is, well, these people have a lot of anxiety, they're just all this anxiety or they're depressed. And when you tease it out, it isn't really depression, in fact, people really often abhor that label of being depressed. I am not depressed, I'm just highly frustrated. And okay, I'm a little anxious, but I'm really mad that I just can't figure out what's going on.

So, for one of the symptoms of that underlying, and we know with a central brain nervous system, is that hypersensitivity is with that. So, there's a high comorbidity. A lot of, and then looking at research, like with migraines, people have more frequent, more severe migraines are much more likely to have ADHD. Looking at research showing, depending on how ranges from about 25 to up to 70 percent of people with Fibro may have coexisting ADHD as part of that.

So, I observed it looking at what research is shown in observational studies, and there are some intervention studies showing improvement. Dr. Joel Young is a sharer in there, has a study, and there could be, you know, more studies that could be done, but from patients, that's something that I will ask about and look for. And sometimes that's just asking questions. And I think that is, you know, I guess that's where I started seeing the connections as part of that.

Not everybody who has it, but it is something that curiously is often coexisting. And again, ADHD often, I don't know what it's like in Australia, but it's often stigmatized as well. Why can't you do that? Why couldn't you just figure that out? You know, what's wrong with you? Why can't you focus better? You should be able to do that. And that also creates a lot more stress, and I think as life gets more complicated in adulthood, there's more demands, and as somebody leaves a very structured childhood with a lot of support,

As they go in through life, naturally they're supposed to become more independent and that often can be adding to that stress that sense of feeling overwhelmed. And so there's interesting overlaps with this.

Dan Neuffer:
This paragraph was just very interesting on how you spoke about this. Now obviously medications and ADHD are, in essence, about methylating it, right? Do you think methylation is a key part of the underlying mechanism or what do you think drives ADHD?

Dr Michael Lenz:
Well, we do know that there's differences in with the stimulant medications and of those of the treatments the ones that have been shown to be quite effective affect dopamine and to some extent norepinephrine levels. And there can be some differences in those levels naturally, you can get that through exercise.

What's interesting is that most people who have fibromyalgia, who weren't diagnosed at a young age like very young and most of my patients who are going back to really early childhood were in highly abusive situations, unusual social environments that were severe. But we're often just naturally very active whether that was just playing in our generation without video games. You just played with friends. They didn't call it exercise or they were in a sport. They might have been in a competitive swimmer and been swimming two three hours a day. So naturally they were sort of treating it and they got their own natural dopamine release through exercise and that helped them naturally with that, and then something happens.

Well, you eventually are done with your Olympic career, or just done with your high school career, and, or you're just, you're not able to maintain that. And then sometimes so, and then many people often will medicate it with other bad with unhealthy options. They might use nicotine, which affects dopamine levels, which unfortunately has a very bad side effect profile. And so does alcohol and marijuana. It may help an outward symptom but not at the inward symptom. So for those who have it, it can be helpful. But so, in complement, using exercise is helpful and pacing with that, and being more efficient with their days. So that is can be for those who have it, a tool not everybody who has fibro has ADHD, and not everybody who has ADHD necessarily has to use medication to treat it.

But part of that is having that awareness and that understanding, and most people by the time I see them later in life, they are often really sedentary, and to validate that, I bet you, you were really active when you were younger, and you're like, how did you know? Well, I just knew that. You might be 150 pounds overweight now, but when you were a kid, you always were playing a lot. Oh, that's right. So it's kind of recognizing that and, and, and and I often, they need to be much more active to feel normal than the average person.

Dan Neuffer:
It would be a miss for me not to ask you a little bit more about this ADHD side of things. What have you found to be most effective in terms of treating it? Do you see that this creates a definite turnaround in people who have ADHD and who have one of these more complex conditions?

Dr Michael Lenz:
So if, if they have it, and I take a careful history of, you know, having struggles going back to childhood. Now, many people who have ADHD have a very high IQ. The average IQ is 123, so that's a 93rd percentile. These are often very smart people. They might not have been picked up, especially if they weren't disruptive in school, weren't necessarily naughty. Girls often are missed and very high IQ boys who are disruptive often get missed. So sometimes you gotta be looking, asking the right questions.

We've taken a careful history and using the DSM criteria, then diagnosing if they have that. And I really do it not as treating fibro, but treating the ADHD part of it, which, if they have it because that's what it's approved for, it can greatly improve the functioning in their life. You know, makes them have more, get done with work more efficiently, which means they have more time for self-care. When they get done with dinner, they actually can do self-care instead of maybe going to have to go back on their computer and finish work because they're more efficient with things, which allows them to actually sleep better knowing they're going to get done. So there's an impact in multiple ways.

The studies, and I mentioned Dr. Joel Young, is that he did a study where it cut the fibromyalgia impact score in half. And that's probably similar. It depends, you know, trying to get the right dose, but it can reduce. I don't have anything that probably best I'll have is maybe something cutting things in half in combination, you know, probably pacing cuts things in by a quarter. Maybe a medication like duloxetine may help 10, 20, 30 percent. So it's used in combination, never by itself. But if I do have somebody who has untreated, it's really hard, much harder to engage into all the behavioral changes, too, because that means planning meals and planning schedules and that the self-cares get to be harder, so it can be quite helpful in those who have it.

But if you don't have it, well, that's okay, you know, there's other things we can have, but it's one of those that I think has been shown to be quite helpful in part of that, but it's not the only thing, it's, and this is one of these where there's many things that are often going on, more that are affecting this, but it can be quite helpful.

Dan Neuffer:
I mean, I guess, you know, obviously dopamine, dopamine, and norepinephrine, and these are key neurotransmitters that we need for affecting neuroplasticity too. And not just neuroplasticity, but if we're talking about focus, I mean, this is obviously central in pain perception. It's kind of a double whammy if we don't have these neurotransmitters and then we also become inactive. Our ability to retrain our brain is really hindered, right? And I think one of the issues is movement, you know, not just physical movement, but our movement through space is a very important part of being able to shift our attention away from pain. If we cannot control our focus, our ability to shift from the thing that's perhaps in the moment screaming loudest becomes retarded, right?

And so that really makes it difficult for people I think sometimes to engage in pain desensitization techniques.

Dr Michael Lenz:
It doesn't have to be becoming a marathon runner or a triathlete or swimming. I had a recent patient who, getting a chance to know her struggles, and she was older but the husband was at the visit and her escape.

She'll just play the piano for hours. She's a gifted pianist. And when she can just, she just goes and plays. You're using your hands. You're creating beautiful music. Some people, it might have just been gardening, you know. Often you take a family history and you hear, 'Well, mom always had to keep busy. She was either knitting or doing the gardening or always had to keep moving.' Or often you'll hear, 'Well, you know, I know the pain's there because once I stop and I pay attention, it's there.' And I'm like, 'Well, okay, but you don't have anything broken.' They're afraid, right, that something's broken in their back, that they're only masking by moving, and only masking by keeping busy.

And to recognize, oh, it could be playing music, playing the guitar, having a positive conversation with somebody, engaging, and having that interaction that's not overly stimulating, but having a positive conversation. There are multiple ways you can have positive dopamine release that helps remodel the brain. But, so, it's very interesting how these interact, and a lot of these overlap with a lot of the ADHD coaching strategies that people need, you know, a lot of these are, 'Okay, you gotta schedule, you gotta plan.' I had somebody today, I'm like, 'Alright, you gotta put these reminders on your iPhone, I'm gonna do it for you because you have a tendency to forget, and I'm not picking on that, but she on her, but I'm like, we, we just have to I'll help you with this.

I don't have a coach I can have hired for you, but I'm going to have somebody work. I'll, I'll work with you and, and I wish I could call you every day and give you these reminders, but if the husband recognizes that these are tools that she needs, let's help work to remind her, let's help make her life more manageable, right? That she, let's give her those. Avenues, those that she needs to help de-stress her body.

Dan Neuffer:
Yeah, and look, I think I might just like to point out, I mean, it starts to sound, I think this is why we often find many people in these illness communities find this whole topic so offensive. Because they're already told that they're not really ill, it's all in their head.

And then if they do something, get distracted, and feel better, that really adds to that story, does it, does it not? Yeah. And yet we've got decades of really solid signs done at the top universities on pain on, on pain research that clearly shows how these different brain behaviors, let's call them, or mind behaviors impact the sensing of pain everything from the meaning of the pain the anticipation, the focus on the pain they've done.

You know, clinical studies with functional MRIs, looking at even religious symbolism looking at, you know, playing video games. I mean, we even use this like for extreme pain patients who have burns all over their body. They're in such agonizing pain that, you know, the medication cannot deal with it, especially when they have to change the dressings on the wounds.

It's just. No medication is going to help. What do they do? They stick a virtual reality set on them and get them to play a video game whilst they do the dressing. Right? And the impact is massive. Right? But nobody is going, oh, look at that guy screaming when they change the dressings. Hypochondriac, it's all in his head.

Because he can see it.

Dr Michael Lenz:
They talked about a study in the book where they had somebody who was going to undergo a painful procedure, and having a loved one there holding their hand next to them helped. And on a lighter level, you know, I'm a pediatrician as well, and kids may get shots. Sometimes there are these middle school students who are, you know, they might think they're real big, and then they gotta have a needle. Maybe they don't hold their mom's hand anymore as a boy, but I'm like, 'Hey, mom, just hold his hand right now. It's going to help him feel better while he gets that.' And it does. It makes you feel better. You know, put one hand on your shoulder, the unaffected shoulder, and just kind of rub and stroke his hand.

My son had to have a painful injury, near amputation of his finger that required surgery. And he's like, 'Why are you rubbing my back?' You know, he's in the emergency room. Every ask later, I said, 'Well, just to make you feel better, it's probably just intuitive, knowing I'm going to just distract you with your back. I'm just going to kind of—this was, you know, he's a college student, but I'm just like holding your good hand. I'm just rubbing your back because I'm just trying to comfort you.' And those are real, you know.

Dan Neuffer:
Absolutely.

Your treatment approach is a multilateral approach. I think most physicians and healthcare providers understand this illness. We'll see the value of approaching it on multiple levels. Could you summarize for us the main steps that we take? Then we'll maybe go into a little bit more detail in a couple of them.

Dr Michael Lenz:
Well, I think it starts with education, right? Having to understand what's going on. And then, I, from a medical standpoint, I look for any comorbid issues. First, I like to get the initial assessment, taking a complex history, because as we talked before going on there, there can be other medical comorbidities. Somebody might have rheumatoid arthritis and Crohn's disease in addition to irritable bowel. So, you want to make sure you don't miss those. People with fibromyalgia and CFS might end up getting cancer. So, you gotta always be on the lookout for unintentional weight loss and unusual bloody stools.

So, you're always having to make sure you don't miss something or somebody develops hypothyroidism in combination with those. You're doing a careful history, like 90 percent of anything, starting with a careful history. I will do a widespread pain index, symptom severity score, and combine that called the FibroScore. I'll do the Fibromyalgia Impact Questionnaire, the revised, and I get a baseline. One of the reasons why that's important is to confirm the diagnosis if you have it and also get a baseline of how severe it is. I can say, 'Well, here's your level. You're at an 89. That's really bad. You know, you're really struggling.'

I had a patient today who's a healthy-looking 37-year-old woman, and her score was 89. I hadn't seen her in two years, and with COVID, it's gotten worse. I said, 'Wow, I would bet looking at you, nobody would actually realize how much struggling you're going through. You're doing a lot of masking, aren't you? You're hiding a lot of things, don't you?' And she's like, 'Oh yeah, I don't want to be one of those people who looks like, you know, poor me.'

And she's just pushing through.

The other reason why that's important to get a baseline is any intervention I do is usually partial. So, if your Fibromyalgia Impact score goes from 89 to 70, and your steps in six weeks went from 1,000 steps on average a day (which might have varied from 200 to 3,000 in that whole typical rollercoaster of untreated or unpaced ADHD), when I do activity trackers, it's up and down and they don't get any better. Then they gradually pace themselves, and six weeks later, maybe they're getting 5,000 steps every day. Maybe that's a little too quick, but now their score goes from 89 to 70.

Then they've got a chance to get education and understanding. Maybe it gets down to, and they may think, 'Well, I'm not any better. I still have pain. I still have fatigue.' Well, actually, you've made a 32 percent improvement. Remember how you said this, and now it's this? And then I'm looking if there are other comorbid issues going along and then treating if they do have these other issues going on. There may be the use of medication, talking about the role of diet, exercise, education, stress management, educating the rest of the family, helping them. There's a certain amount of coaching of realistic life and job situations that are going on that may be really hard to sustain. It can be really hard.

Dan Neuffer
So there are people who are sustained.

Dr Michael Lenz
Well, and sometimes there are situations where people are really in a tough spot. You know, they may be in a very poor relationship financially. They're in a tough spot where, you know, I work to have people can get a lot better and hope to reverse the symptoms, but not everybody is in a situation where they can. Certain obstacles out of the way, they have to put food on the table and they might have kids that they have to care for. So, but at least understanding like, hey, we're making some improvement and do the best we can. You know, in Wisconsin here in the United States, we have four seasons. And in our winter, for most of my patients with fibromyalgia, it's a lot worse. And I'll use an activity counter, counting their steps and keeping track. And then in the summer, they may build up and like, 'Wow, I got up to 10,000 steps a day.'

And I was doing really well. Well, when it gets really cold, the days get shorter and you get home from work and it's pitch dark. Okay, I know it's not fun to walk on the treadmill. It's much better to get fresh air, but it's 10 degrees outside. It's the middle of our winter. Just walk on the treadmill, you know, that's the, you know, ride the bike. You know, it's not perfect, but just keep that steps because that's medication, that's what you need.

I use the analogy with exercise, not to compare us to dogs, but there are breeds of dogs that if you walked them around the block once, that's all they need. And then there's breeds that want to be run three miles, three times a day. You know, they're just, that's just what they need to be normal. And if that's how you're bred, just go, 'Oh, that's what I need.'

And try to find creative ways, whether that's talk to a friend, walk your dog, you know, keeping that. So as far as just my general approach that starts with the history, education and trying to pace. I've thought of sometimes you hear about protocols, whether I should have a lens protocol. I teach Medical Residents, have students shadow me and I don't have a protocol, because everybody's an individual.

And if I think sometimes you rubber stamp something like this, the circumstances are unique. I might say walk but maybe they got severe spinal stenosis that makes walking harder, but doing a stationary bike is there. So everybody's circumstances are different. So I think it's very hard to, you have to individualize it, and I know that's.

Dan Neuffer:
Absolutely, and that's the issue you see with doing studies on approaches because everyone's always looking for the cure, the treatment, and it's completely the wrong approach.

And obviously for folks listening who are perhaps more diagnosed with chronic fatigue syndrome or POTS. I mean, you say go walk. I mean, this isn't necessarily feasible, right? They're struggling maybe just to stand up. And yet there can still be benefits from exercise, but the way you engage with someone who doesn't have the fatigue or the orthostatic intolerance and who's more on the pain spectrum, it's different, right?

And I think, yeah, the devil is in the detail. We need to tailor our advice. And so I really appreciate you pointing that out. And one thing that people might not recognize too is that when we talk about walking, and obviously you mentioned the bike, but when we talk about walking, the benefit is not just in the physical movement. The benefit is also in the experience of the brain moving through space. Because when we move through space, this has an impact on what we can see, and the way our brain processes this movement through space can actually affect how we relate to how we experience the symptoms. It has an impact on sensitization.

And we see this in treatments for other conditions like PTSD where we look at the visual stimuli and movement in order to change how we process traumatic memory. But we think of traumatic memory as being something very different than the feeling of pain or fatigue or heart palpitations.

But I would pose that perhaps it isn't, I would pose that perhaps it isn't.

Dr Michael Lenz:
I kind of like to say that the symptoms of pain and anxiety are both alarms that are there to get our attention and serve a purpose. I was sharing with the same patient, with a score of 89 today - a 37-year-old woman. My office is right next to an interstate. I said, 'You have anxiety and pain for things that shouldn't cause pain. You don't have anything mechanically broken, but your brain feels like it is. You shouldn't have anxiety over things your friends probably, who don't struggle with this, aren't having anxiety in the same situations as you are.'

But if you walked, I said, 'Well, get your steps and let's start by walking down the interstate on the side of the road.' Well, you would have anxiety. You should have anxiety walking down a busy interstate. That's a healthy form of anxiety. If you break your leg and trip and step in a hole and it's a broken ankle, well, you should have pain. Both of them are alarms. And like you said, with the activity, when somebody might have POTS and walking, it might be, 'Can we get you on a bike? Can we do it for 30 seconds? Then stop, relax, stay hydrated, pace yourself, and then add those up over the day.'"

It requires a lot of patience. As you know, working one-on-one, with a lot of coaching people, a lot of hand-holding and encouragement, and just cheering for those small little victories, and keeping them encouraged not to give up, right?

Dan Neuffer:
I think that's the secret, Michael. It's the small victories. In fact, I think the small victories probably have much more value than the big victories, because many small victories over a period of time, that's what transform and help people transcend this illness. It's not one big magic pill, right?

The other thing you look at is sleep. Sleep is a tricky one. Some folks get some support and medication; some people benefit even from supplements, whether herbal. But sometimes it's also things too, I suppose, neurotransmitter support can help some folks. And some folks seem to struggle no matter what you do. In fact, occasionally I even come across some folks who still struggle after they've recovered from the illness or are essentially symptom-free.

And then, of course, it becomes tricky: how much is psychological, how much is neurological? These are not necessarily separate things either. What have you found to be most effective for sleep in general? And what about those folks where things really just seem to not respond to all the normal things? What do you do with those?

Dr Michael Lenz:
Well, most chronic sleep issues have a strong behavioral aspect. Again, taking a history: if somebody has obstructive sleep apnea and their airway's collapsing multiple times an hour at night, well, you gotta treat that. Obviously, those are priorities. If somebody's got restless leg syndrome, that's a problem where their legs and their brain are waking them up constantly through the night.

Also, many people can have a generally hyper-aroused brain. So, if they're often, you know, many people with RLS can be treated with exercise. So, if you're exercising regularly and doing those self-cares and those good sleep hygienes as best you can having that is trying to incorporate those the best you can.

But life, like a lot of things, gets in the way. And part of, we think that part of fibromyalgia may be also a sleep issue, as I talked about a couple studies in the book where they played an alarm alerting noise during before they hit deep sleep without, you know, for three nights and they induced the symptoms of fibromyalgia in healthy subjects, so we know that part of that can be just how somebody's wired that makes it more challenging. So recognizing there, there can be some things you, you can do, but it can be challenging.

And then, with behavioral things, then there can be anxiety over not being able to sleep, which then contributes to, I can't fall asleep, here we go again, I'm not going to be able to do it, right? Or maybe, as you say, somebody who may have extreme fatigue or maybe some POTS and lightheaded, oh, I'm going to fall, here we go again, I can't exercise, you know, and then it starts to, you know, that catastrophizing, that starts to occur, you know, whether it's keeping a journal doing a self Bible study or something that helps calm, relax keeping the bed for sex and for sleeping, trying not to read in bed, look at your phone in bed trying to incorporate that.

Sometimes but with technology, just like the SEP counter, there can be some benefits. Sometimes a lot of people use an app that tracks their sleep. How much did you actually get some sleep? Maybe there's some that can record sleep. If you're by yourself, you might go, oh my gosh, you snored severely. You stopped breathing. They have recording sounds. You might be able to pick some of those up.

But again, not, one size fits all and one circumstance fits all. But sometimes it can happen pretty suddenly, like with a lot of CF where there might be a dramatic change where somebody gets an illness and like a severe COVID or an illness, then they are waking up at night and they never get back into that healthy routine because their exercise gets knocked down.

So there's a lot of back-and-forth relationships with all of these.

Dan Neuffer:
Have you found medications to be helpful?

Dr Michael Lenz:
Yeah.

If they have underlying restless legs, then periodic limb movement can be helpful. That's one of those, but not as strongly helpful. I don't like using things like Zolpidem or Sonata. I don't use those. Sometimes people already come in on them by other providers and they're reluctant to go off them. The benefit from those prescriptions, those types is, I don't think, as robust. I don't try to use that routinely. I don't use Benzodiazepines. I don't think they're very helpful. And there's also a propensity for rebound insomnia.

And then also, many people who are struggling with this may be consuming a lot of caffeine as compensation for poor sleep. They're drinking a lot of caffeine during the day, which can then make it hard to sleep at night. Some people may be self-medicating with alcohol because they can't relax, so they'll have some drinks, which can help them fall asleep, but then it causes rebound insomnia, and they get into this vicious cycle. It doesn't allow them to get into deep sleep as well. So there are a lot of these factors. Trying to have an open conversation, talk about those, and say, 'So, how much alcohol do you drink? What about your nicotine use? What about these other things?' and making sure we're trying to limit those as best we can, so.

Dan Neuffer:
Yeah, look, I appreciate your approach, and I guess the thing is, you know, it's my view that the sleep issue is the direct result of the brain dysfunction that we're saying is central to the illness.

And so, one cannot just expect it necessarily to be treated, obviously, resolved. Although, not everyone with the illness has the sleep issues, yes? Or at least they don't necessarily know they have the sleep issues, right? Because you might think you're sleeping, but if we actually have a good look at how deep you're sleeping, you might be surprised that, as we see with the studies, that obviously has an impact as well.

But there are some folks, let's say, who really, you know, the way we talk about the expectations, our mindset, the psychology, our habits, all of these things. But it strikes me that some folks get into such a spin with sleep, where we're getting into kind of trauma territory. And you almost need some kind of a circuit breaker.

Just bring down the drama of the sleep issue to bring it down to allow you to engage in these helpful strategies. Have you found that some group of medications or treatments can kind of be a bit of a circuit breaker and, if so, how would you use them?

Dr Michael Lenz:
I don't try, I try to limit my use of medications, prescription medications. Like I said, I don't typically use Benzodiazepines. If they have some coexisting restless leg, I'll use Gabapentin. Some may be Onsopedem if they can. Sometimes if there's some, I might use something like Amitriptyline, Nortriptyline, or Cyclobenzaprine at a low dose to augment that.

Some people, if they're traveling in different time zones, may use Melatonin. There's also somewhat of a placebo effect, like, and whether, we know that affects the brain too, right? Just like holding your daughter's hand while she gets a shot makes her feel better, and those healthy routines, you know, when my, as a child, your mom going to bed, going through prayers, and tucking you in and kissing you on the forehead. Boy, that's a healthy routine. That helps you calm down. That's a really healthy thing.

For many people, they didn't have that. They may have had a very troubled childhood going back with inconsistent nighttime routines. They may have had a spouse who's had substance use issues or a parent with substance use issues and potentially even abuse issues. So the bed actually has not been associated with a calm oasis of restoration, but a hope for something to maybe restore you, but hasn't, never has had that. And that can, like you say, that PTSD and those traumatic things that can take a lot to rewire, you know, that is some pretty deep-seated, especially going back.

I had a patient of mine who is doing better now. She had some comorbidities, like we talked about, and some weight issues. She had some ADHD and restless leg, but severe fibromyalgia impact score, and it was like 95. And I just asked, I got a chance, my last patient of the day, I spent a couple of hours with her and I said, you know, a lot of people who have fibromyalgia have been through some really tough situations where they may have been abused in some way. Have you been? And she said, yeah, actually when my parents were divorced, my mom had these guys over, and they'd come into my room. And they'd do stuff to me, and then I had to call my dad to kind of rescue me. I was raped by a boyfriend for a couple of years in relationships. And she's like, I never told anybody. But getting a sense, just like you, you know, sense with a neighbor who may have been a survivor, there's that sense I said, I think you've been through something you didn't want to share. Nobody wants to talk about those things. But to recognize that those are things that are pretty big deals and recognize, you know, that can have an impact on where you're at now.

And sometimes just sharing that with somebody, I'm sure you've heard stories of people who've been through some things and let, knowing that somebody's there and cares for them and what they went through and help understand what obstacles that somebody may be going through and trying to help rewire that and hopefully getting support from a spouse or partner that helped them get through things much better.

Dan Neuffer:
Look, absolutely. I think the research is very clear on this group of illnesses on both adverse childhood events as well as trauma in general and complex PTSD. If we look at how the brain is affected, especially during childhood, we can see how things can impact us. And yet I still see people recover despite all of these challenges.

So that's always important to keep in mind. As we finish up this wonderful talk. You're actually a Pediatrician, is that right?

Dr Michael Lenz:
So, I wear three different hats, and maybe in Australia, they don't have this. So, I'm double-boarded as my primary residency training. I'm both a Pediatrician and an Internal Medicine doctor. There is a combined specialty where we do two residencies combined. I love taking care of children, I love taking care of adults, and I also like the medical detective. So it's really helpful for working with things like fibromyalgia.

I often say, and I have a chapter in my book, you know, talking about pediatrics and fibromyalgia. As you read that, I said, you know, your fibromyalgia didn't start at age 42. It might've started with growing pains. It might've started with that abdominal pain or painful periods and migraines. So I get a chance to see the spectrum. Interestingly, the first sort of central pain syndrome, chronologically, is colic.

Colic is, I used to describe before I really understood fibromyalgia in a more developed way, is that to parents I say, well, you know, colic is where the baby is much more sensitive and has a hard time self-soothing. That's like fibromyalgia, where your brain's more sensitive and you have a hard time self-soothing.

And it's interesting now as I'm a pediatrician, I'll have a baby who's maybe colicky and I'll just mention to the parents, not in a blaming way, but I'm curious, do either of you have a history of like IBS or migraines? Any problems sleeping? Is there any fibromyalgia or chronic pain in the family?

Oh, well, yeah, well. And I almost from the get-go can say, well, we'll see how things go. As a child actually gets more physically active, when they can crawl and walk, those symptoms get better. And I said this is probably going to be a child that is just going to have to be more active. You got to make sure they don't spend too much time on video games. Get them outside. Keep them moving. Keep them active in some kind of activity.

Sometimes it's with the parent. Now the parent may have just a regional pain. Maybe the grandparent has now developed fibromyalgia or CFS symptoms, but I'm pretty strongly viewpoint that, well, if you can identify these things early and you can be proactive, I think you can try to, like you say, with the plasticity, if you can identify these things early, you can have positive life experiences, right?

If you can catch it early in childhood, and then incorporate a healthy lifestyle, if there are some coexisting medical conditions, identifying those and treating those and catching those early. So it's actually pretty interesting. So, the long answer to, yes, I'm a Pediatrician, and I'm also in Internal Medicine. I got into Clinical Lipidology and extra certification, which has to do with cholesterol management, and heart attack prevention.

And then I got certified in lifestyle medicine, which has to do with non-medication management. That talks about sleep, diet, exercise, stress management, addictions, and other related issues, which are a huge part of chronic medical problems, whether it's fibro or high blood pressure, diabetes, obesity, etc.

Dan Neuffer:
Do you treat children with fibromyalgia, CFS, or POTS?

Dr Michael Lenz:
Yeah, there are not as many because just by the demographics, there aren't as many, but I'm much more likely to have a regional pain syndrome.

Dan Neuffer:
Right. It's a difficult thing to explain to people and for them to change how they approach life when they're adults. I wonder, how do you find out with children? Obviously, there are other dynamics going on in the family home with the parents. A lot of people talk about how this illness is familial and it runs in families, but people always jump into saying it's genetic. I think there are all kinds of factors involved really in what causes issues to run in families. But with that in mind, how do you go with children and have you got any advice for parents?

Dr Michael Lenz:
You know, because I treat both kids and adults, I'm often seeing sometimes three generations that I'll see at the same time. And it starts with education and understanding their child, especially if it's a parent who doesn't have one of the central pain, doesn't have a fibromyalgia-type brain, and isn't pre-wired. I think it's sort of like there's a susceptibility and then there's the environmental factors, right?

I'm susceptible to diabetes, but not fibromyalgia so much. But given the wrong environment, I'll develop diabetes by this age in life. So part of it is just that education and that understanding. When I have parents who have a colicky baby, I'll say, and this is at a simple level, I'd say, you know, just so you know, your baby's healthy. This is common. You're not doing anything wrong. From a simple standpoint, it's education. That, unlike colic, does usually get better.

Interestingly, not all the time. I think sometimes people just tolerate that and they go, oh my gosh, my baby's always been a fussy baby. Never slept well. And when you hear that going back with time. So part of it is education. And sometimes it's getting, one of the parents may be struggling and getting them. Getting their help, one of the parents getting help, and then trying to get with the healthy lifestyles, and recognize this person, I, I jokingly have said on podcasts that I've been on, and in my own podcast, as well as in the book, is that I don't know if in Australia if there are these sleepovers where kids like to stay up late and have altered sleep schedules.

As somebody who works in this world, I cringe with that because what if there are 10 girls over but there's that one girl who's more prone to migraines or IBS and this is, she ends up having this get triggered from staying up till two in the morning on a weekend. So recognizing, ah, that's really hard. It's healthier if you can avoid that as much as possible.

Sometimes my kids will say, why, why do you have to be like that? I'm like, well, when you take care of people who are struggling, simple tips like, you know, try not to get up at 5 in the morning. Yeah, the phones. Try not to get up at 5 in the morning to catch an early flight, which really means you gotta get up at 3 in the morning to get the 5 o'clock flight to get there early but then to be miserable the whole day and a couple of days because it sets you off.

Take the flight at noon so you don't have to rush to the airport. If you're going to take a long car ride, try to go for some exercise before you get with the kids in the car. Take a break driving somewhere. In the U.S., people drive lots of places. We have a big country in driving. So, take a break, get out, and stretch your legs. Don't sit in the car for eight hours. It's just, you need to get some exercise. And plan some healthy foods to bring along.

Try not to say, oh, we're going on vacation. We're just going to eat a bunch of fast food. Try to incorporate those healthy lifestyles. And like I said earlier that child, you might have two kids, and one needs to eat healthier and get that sleep, and the other one can eat junk and get no exercise and have no issues, right? It's just how everybody -

Dan Neuffer:
These little proactive things are just fantastic, you know, and they seem so obvious and simple, and yet they're just not front of mind. And I think that's why education is so important. But, you know, teenagers, from a psychological point of view, to tell them anything short of maybe jumping into a pool when you're on fire is hard for them to listen to, right, at times.

So when you're dealing with these kinds of challenges and behaviors, and you know, addictions around behaviors and foods, I mean do you find that those are a bigger challenge? Or do you find children tend to respond to your messages?

Dr Michael Lenz:
I think it is interesting. I think they probably may listen to me better than maybe their parents, and if supporting that. And I often say, triangulate, you know, I may say, 'Oh, hey, share this podcast episode with your spouse. Listen to this with your teenager driving because I don't want to speak at.' And I often say, 'Well, the people who do these do better. If you can incorporate these, try this.' In a couple of weeks, we'll be doing a three-part series on my podcast, interviewing a Pediatric Neurologist, and talking about migraines.

It's just keeping a simple headache diary, and I'll say to the teenagers, 'You know, migraines are much more common than fibromyalgia and disabling at that level.' And I'll say, 'Okay, migraines, you have them, it's not fun to have, it's very disruptive.' I say, 'Well, keep a simple diary. I want you to just write down mild, moderate, or severe for your migraines, how long they lasted on your calendar, and just write when did I go to bed, when did I get up, and just a couple of basic, simple things with that, not even getting into a huge diet.'

For sleep, it's a huge trigger for migraines, especially in the teenage years. Stress, maybe a little bit, usually the structure still is there, the real adult stress hasn't hit yet to some degree. And I'll say, 'Okay, I want you every day to get up. What time do you have to get up to make yourself beautiful for school? Alright, I have to get up at 6 o'clock every day.' Every day, including the weekend, for two weeks, I want you to get up at the same time. The first week, you're going to get into sleep recovery. In the second week, and you might have a little less headache. In the second week, hopefully, the headaches have gotten a lot better.

I say do it for two weeks, we'll come back. Alright, your headaches are a lot less. Now, it really sucks to have a migraine. It's really disruptive. How important is it? Now, if I said, for the rest of your life, you have to get up at six in the morning, they might say, 'Well, I am never going to do that.' But at least you have some idea that you have control over this, that you can have control, that this doesn't just have to happen to me. Wow, the impact of my choices can have a pack impact as they go throughout life.

And then after a while, hopefully, they'll be like, 'Yeah, I'm not going to go to the sleepover, but guys, I'll meet you. I'll come over for breakfast. I'll make you guys breakfast in the morning. I'll meet you for breakfast. So I got to leave. I'm doing this experiment Dr. Lenz made me do.' And then they might share that story. And then one of their friends may share, 'Oh, I have severe migraines. I'm going to try that too.' So just those simple lifestyle things can make a difference. Trying it as a short-term experiment, you know, 'Well, what if we tried this? Do you want to try this? Come back. Give me the feedback.'

So, that's one simple thing.

Dan Neuffer:
I love your approach. It's awesome. Alright, as we finish up, is there any final message you'd like to share with people listening?

Dr Michael Lenz:
We covered so much. I would say that there is hope, you know. I've had many patients completely reverse their fibromyalgia, typically with a multifaceted approach. But hopefully, at least, reduce the struggle and the suffering to the best of whatever you can within your circumstances, to whatever struggles that you may have in unique circumstances.

For those who want to hear more about this, I do have read more of the book, also available on Audible, Conquering Your Fibromyalgia, Real Answers, and Real Solutions for Real Pain. And also the podcast, Conquering Your Fibromyalgia, where we have different conversations, interviews, and sharing stories. I have a recent episode series on the author of Gone with the Wind, who was born in 1900, a famous author and book. But she actually, unfortunately, struggled with what we now understand retrospectively of fibromyalgia.

And unfortunately, she didn't have any podcasts like what we have here, any information, and any hope, and she was basically told that she was just a hypochondriac, and there was all in her head, and she was just making up, and highly frustrated, yet extremely talented, and interestingly, one of the ways she escaped from her pain and suffering was actually taking the time to write her novel kind of another escaping, as you've probably done with some of the journaling, so and there's not one thing.

This isn't just one. It's a multifaceted multilateral approach to help and give hope. And I, again, as you probably, if you don't already know, I love helping people who have fibromyalgia. If there are people in Australia going, I wish he was in Australia, I would love to see him. But my hope too is with my book and podcast is to help one, the patient who's struggling. Number two is the loved ones who don't have this. But truly want to understand and get this and then hopefully other physicians who are kind of maybe neutral but at least open.

They didn't have training just like I didn't on this and open to help understand their patients. You know, they say I want to help my I just don't know how. And then they can learn more and have this open because when you can help people who have struggled like this, I had a, just a patient today, her fibromyalgia impact score in 14 months went from I think about 90 down to 33 and she's just had a knee replacement and she's, I'm pretty confident it's going to get under age under a score of 20 once she can get back to full recovery from the normal rehab from a knee replacement from osteoarthritis and, and she's feeling good.

And I said, did you ever think you could, you know, two years ago before you ever referred by a neurologist to see me, do you ever think you ever could have been functioning like this? And she said, I honestly didn't, you know I think so many people have just kind of that learned helplessness. Because there isn't offered any hope they've almost have kind of given up and and working on this multilateral multifaceted approach, so.

Dan Neuffer:
Well, Michael, look, I really appreciate you showing your experience, your knowledge, and your wisdom. And I appreciate you doing the work you do to help folks with this illness. And thank you for coming on Wisdom From The Other Side.

Dr Michael Lenz:
Well, thank you very much for having me.

Dan Neuffer:
Thanks for tuning into this episode of the podcast. We hope you felt supported by it. If you have any questions, feel free to reach out to us via cfsunravelled.com, and make sure that you subscribe to the podcast on iTunes or wherever you listen to it. And you can leave a comment and a four or five-star review if you feel so inclined.

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