Fed Up With Fibromyalgia? A Pain Expert Gives Advice  

Updated: Oct 28, 2020

This article is a transcribed edited summary of a video Bob and Brad recorded in May of 2020.  For the original video go to https://www.youtube.com/watch?v=8DqzQ2uD-b0&t=285s

Bob: Once again we are joined by Doctor Adriaan Louw. Dr Louw is a pain expert. He is actually originally from South Africa. 

Dr. Adriaan Louw: That is correct.

Bob: I’m going to have you, Dr. Louw, explain your background so that we can let people know why they should listen to you.

Dr. Adriaan Louw: Sure. I think the best way, I haven’t even said it for that matter, is I was a failing therapist. I was taught very mechanically physical therapist, and was trying to fix pain, if you will, with a lot of mechanical stuff. And then, you know, struggled with it. Then I started taking this thing on: pain. Learning of pain. I was taught by very smart people. Loved it so much, I decided to study it. And so now, 10 years of research, lots of research studies, working with people, training students. We just figured out the more we learn about pain, the better we are. We’re more caring and compassionate, but also our patients’ lives are better for it. So we’re studying pain. We’re working with people in clinics.

Bob: He’s being very modest because he’s studied under some of the best therapists in the world. I mean, some of the guys, they’re icons in our field. You’re not going to know their names, but trust me on this one. So, yeah, as a starting point for some of you, after you watch the video, you may want to check out some of his books. He’s got a lot of books on specific problems. You know, like if you’re having back pain. They all kind of carry a common thread. But in today’s book, you may want to get, is your Fibromyalgia Workbook, which I have recommended to a lot of patients, by the way. 

Brad: Yeah, these books are all written for the layperson, for the patient. You can read it and self-treat and take care of yourself through that knowledge. 

Bob: Maybe you want to just briefly go over how to approach these books.

Dr. Adriaan Louw: Yeah, a lot of it is just we have learned a lot about pain in the last 20 years. And especially the neuroscience, the science behind the nervous system, the brain. And so, you’re right, there are common themes. We teach people how pain works. But then, literally, go in directions. There’s definitely differences. Like, in fibromyalgia, we get widespread pain, where back pain may be more localized and then slowly spread to a side, etc. But there’s science behind it. And we just went and studied the science and put it in a language and a format where patients can read it and go, “Wow, that makes sense.” And again, understanding everybody’s pain is different, but there is a commonality and we just try to spread that theme. Many of our patients will write us back and say, “you know what, this is good. It’s not exactly me, but that’s okay because everyone is different, but it’s alright. It gives us a foundation, and then we can work from there on out.” Yeah.

Bob: Let’s say a typical fibromyalgia patient comes in, somebody with fibromyalgia, can you maybe talk about what you’d start with or maybe some of the common problems that you see specific to fibromyalgia. 

Dr. Adriaan Louw: I’m your guest today, but I want to correct you because I don’t like the term fibromyalgia patient. 

Bob: I agree. I said that wrong. A patient with fibromyalgia. 

Dr. Adriaan Louw: Exactly. You do not want to identify people by their diagnosis. 

Bob: I caught myself but he’s absolutely correct.

Dr. Adriaan Louw: So when a patient comes with fibromyalgia, you know, first of all, we have taught our receptionist, in our clinic, when somebody calls in and says, “Hey do you guys see fibromyalgia in your clinic? Do you guys treat it?” The most common thing I’ve taught my receptionist is what you’ve just heard is, “I hurt, I’m tired, I’ve been everywhere. I probably don’t sleep well. Can you guys help me?” I’m not making fun of it, I’m not removing the label, but there’s this common theme we find. So, when patients come to us, first of all, we screen them. We make sure we’re not missing anything. But I’ll ask patients, you know, since developing fibromyalgia, let’s call her Suzy, right. Suzy, since developing fibromyalgia, what’s the biggest thing that bothers you? And they’ll say things like, “I’m really tired. My stomach is very sensitive. I got this mental fatigue.” We call it often the brain fog. “You know, since developing fibromyalgia, my brain gets tired. I cannot focus. I can read one page in a book and I’m tired.” We now know there’s a science behind it. We can take that science, put it in a story, and say, “Let me explain that to you.” So, for a patient that comes and says, “Since developing fibromyalgia, I’m mentally tired. I can not focus and concentrate. Or they forget things. And heaven forbid nowadays, you go to your doctor and say, “forget things” because now we have these catastrophic diagnosis. I’ve got dementia. I’ve got Alzheimer’s. Here’s what we do know. When you’ve got pain, there are nine areas in the human brain that are always busy. We call it the brain meeting. So, if I reach over and with Brad and I punch him in the arm, and I quickly scan his brain, there are nine little dots in the brain. And he’ll probably have a go at me. There are nine areas in the brain that will quickly meet. And this is what our brains scans, all these fancy blob scans show. There are nine departments in the brain that meet. Hey guys. Ding, ding, ding. There’s a major threat at Brad’s left arm. It’s called this crazy South African. He just punched him in the arm. We gotta meet about this. These nine areas light up in patients of fibromyalgia, back pain, ankle sprains, about every person. They talk to each other and they come to a conclusion. And what we now know is when the brain gets busy with pain, other jobs suffer. This is how we tell patients. “Suzy, in your brain there are nine departments. There’s a movement department. There is a focus department. There is a memory department. There’s nine departments. In every department there are four people working, so it’s fully staffed. ”I’m a physical therapist, so I say, Raise your arm. So, the movement department is fully staffed. So, this is what you do. You raise your arm beautifully up. The brain now sits and says, guys we’re struggling. We went to the Mayo Clinic. We went to this therapy clinic. We went to this clinic, this clinic, we’re not getting any better. We’re going to have an emergency pain meeting this afternoon. So, one person from every department needs to come. Because pain is really important. Without pain, we’d be dead. So, it takes precedence. So now suddenly, there’s three people doing the work of four. So, I ask you to raise your arm and you have difficulty hiking it up. Not because you’re making it up. Not because you’re lazy. Not because you don’t want to get better. Your brain is prioritizing. So now, the brain is a pain meeting. So, what suffers? Movement, focus, concentration, memory. All the things we see the brain has to do. If you keep going from doctor to doctor and the pain’s not getting better, you’re not getting help, the brain says, we still don’t have it figured out. We need another person to come to the meeting. So, what happens is memory goes down. Focus becomes limited. All these things we see. And what happens is the brain gets busy with pain. Now let’s flip it around. When we sit with patients and explain to them what’s going on, there’s nothing catastrophically wrong with you. Do you hurt? Yes, you do. We validate them. Say, “I know you’re hurting, but we can make you better.” We work through this process. The brain starts getting smarter though. “Hey, this guy with the funny accent is making some sense. I’m not buying all of it yet, but I’ll send one person back to the department.” So, what gets better? Movement gets better. Focus, memory, etc. What it means for someone with pain like fibromyalgia is, “You mean this can get better, Adriaan?” Yes ma’am. We need to understand 30 years ago we believed the brain is the way it is. That’s it. Take it or leave it. This thing is as plastic as can be, it shifts every day. How cool is that? The biggest thing we can give patients is hope. “You mean this can get better, Adriaan?” Yes ma’am. And how do we do it? We build from pacing graded exposure. So, we build a program around this where maybe Suzy reads a little bit and then she goes and takes some, she does some walking. Go walking, get some blood flowing through the body. Come back, read a little bit more. So, we pace them, and can slowly get back to what they need to do. But those would be examples. 

Bob: That’s the education part of it. 

Dr. Adriaan Louw: Correct.

Bob: Again, through education that starts decreasing the levels that people that feel that they need to be involved in the pain. 

Brad: So, when you see a patient with fibromyalgia, you start working these steps,

Dr. Adriaan Louw: Yes.

Brad: Is there something that may take a week, a month or it depends on the individual? 

Dr. Adriaan Louw: It depends, Brad. There are so many things here. We can see patients in a relatively short time. A lot of it depends on where the person is when they walk into our clinic. You know, everybody is on a journey. Some people are beginning the journey. Some people towards the end of the journey. There are very interesting cases. But you know, we will see these patients. It can take us weeks. It can take us months. And that’s okay. We’re there for them. And you know there’s no magic answer. We pace them through the process. Many of our patients we get really to a good point and they may come back a little bit later on for a little ‘top off’ if you will. Almost like the dentist. Right, come back. 

Bob: Sure. Do you do the education process through the book or do you do some through talking and some through the book?

Dr. Adriaan Louw: Yes, so my publisher is going to get really mad at me because I don’t use the books. Because I memorize them. I wrote them. Right? So what I typically do in the clinic is I have a white board and I draw and I write, because it’s more realistic. It’s for me. It’s not just for us to sit and go through a cookbook.  What is nice about the book is for people who have no background, this is a good place to start. Even clinicians will write me and say, you know the patient book helped me understand. They learn the verbiage. 

Bob: It helped me, that’s exactly right. 

Dr. Adriaan Louw: Yeah, the students sit in our class and they literally would read and read and read and read and read. But as we get better, all it is, is a conversation. But we write things, like, you know, I’ll give them a marker and say, “Suzy, write down for me the 10 things that since developing fibromyalgia bothers you? Fatigue, memory, whatever.” And I’ll talk her through it. Then we make a list, and then we put a big mark says this is your lion. This entered your life. Now your life, the system is ramped up. We do it in real time, but more as a let’s talk about this. 

Bob: So, is it fair to say like, let’s say I’m from Luckenbach, TX? 

Dr. Adriaan Louw: Is that a real place? 

Bob: It’s a song, believe it or not. Anyway, I’ve got fibromyalgia and I want to get better obviously, so can I start with your book, and then how would I find someone that’s trained in pain neuroscience? 

Dr. Adriaan Louw: Yeah. The good news is yeah, you can always start with the book. Again, it is limiting, right. Books have never changed the world drastically when it comes to health.  It gives you a foundation. It’s always good to have a health care provider. The good news is I’ve been teaching for 20 years. I’ve trained, I would argue, close to 100,000 people. 

Bob: Seriously. 

Dr. Adria