Spoonie Radio Ep 04: Sue Ingebretson

Listen to Ep 04 where Sue Ingebretson and I talk fibromyalgia, the Trio of Restoration, how to achieve "chronic wellness," choosing hope over despair, and more



DR. CRAIG: I’m your host Dr. Courtney Craig. Today I'm joined with Sue Ingebretson. She’s an author, speaker, certified holistic health practitioner and the Director of program development for the fibromyalgia and chronic pain Center at California State University, Fullerton. She's also a patient advocate and the fibromyalgia expert for reliance health community of health conditions website and the fibromyalgia editor for Prohealth.com. Her best-selling book FibroWHYalgia; Why Rebuilding the Ten Root Causes of Chronic Illness Restores Chronic Wellness details her own journey from chronic illness to chronic wellness. She's also the creator of the FibroFrog and the FrazzleFrog of therapeutic stress relieving tool which provides powerful healing benefits with fun. I can't wait to ask you more about those two things later on. Welcome to the show, Sue.

SUE:  Hi, I'm so glad to be here, thank you so much.

DR. CRAIG: Thanks, I am really looking forward that to this, because most of the episodes have been very focused on chronic fatigue syndrome, so it will be nice to get a fibromyalgia centered show today. So for those that have not read some of your work over on Prohealth, and are not familiar with you, can you first start and tell us a little bit about your fibro story?

SUE: Oh sure, it's always great to start with your story so that people can understand where you come from. Sometimes I forget that, as you progress. I was sick and absolutely unable to find answers. I did everything I was told. I am such a rule follower; saw every Doctor there was. I think I saw in a matter of about 5 years almost two dozen doctors and I took every medication handed to me and I did not find answers. I did not find solutions, and I just kept feeling worse and worse. I was told by doctors, well that's the way it progresses, which is a real key issue for me now: progressive form of the disease. I found that by taking action myself, figuring out what things worked for me, and taking the steps needed to make it happen, I found absolute complete transformation. I tell everyone I jumped in with both feet, not having any faith at all that was going to work. Not having any idea what I was doing, but just knowing that I was doing something. So you have to start somewhere. I can only say from this end of this scope that it is so very, very worth it.

DR. CRAIG: Now, a lot of patients with fibromyalgia are also diagnosed with chronic fatigue syndrome or vice versa. And as far as we know there isn’t any research that really shows us why these 2 conditions are so similar. There's so much overlap. What is your opinion on this, do you think we’re dealing with 2 distinct conditions or they're the same condition with different manifestations?

SUE:  I love that question, and if you'd asked me even 3 years ago I would've said, I think that they are the same condition with just different emphasis. Chronic fatigue obviously has an emphasis on fatigue first, maybe pain later and cognitive issues are the top 3--of course there’s much more. Fibromyalgia, pain first, fatigue second, cognitive... somewhere in there. I think now, though, that they really are 2 separate conditions. I believe, now this is just an opinion, that chronic fatigue has more of an infection basis, and I don't think we’ve found yet what that is. And I don’t think it’s one thing. I think it can start as one thing then it compromises the system and becomes more. And what is exciting though, and this is what I always bring up no matter what we’re talking about, the exciting thing is the basic fundamental things that heals one chronic condition heals another. So it doesn't mean you're going to eradicate everything but it means you're going to get yourself so far on the other side of feeling well that you're going to be able to look into and keep going and finding the things that work for you best. So those basic things work for both conditions.

DR. CRAIG: I want to talk more about this too because when we look out there, a lot of clinicians, a lot of researchers, take a very reductionist view of these 2 illnesses. We focus on pin-pointing mechanisms of pain or the brain abnormalities, or the gut abnormalities, but when you’re saying here seems to take a more holistic approach and asks these questions about the illness in a different way. So could you explain this holistic way of thinking about such a complex illness?

SUE: You know, I like that and what I do, I'm just a mom, I'm just a Nana. I used to take my granddaughter out and have to walk with a cane. I can't even tell you how devastating that was to me at the time and I am a research reading nut. I’ve read everything I can get my hands on, and I think what I do well is I can glean from that the important facts and then I can help others, and express those facts in very easy to understand fashion. So from my perspective, this condition is a series of breakdowns. It's like a car that's running and just starts to rattle and it's not working so great and something else starts to rattle and it’s not working so great, and something else... you know, there are 15 things wrong with the car before it finally breaks down on the roadside. So that’s how I look at fibromyalgia and when you go back and fix those things, you may have to start with some of the bigger things first, but that's how you're going to get back on the road again. And it's a matter of systems; I really like looking at fibromyalgia and any chronic illness as a systemic problem. It is so clearly a systemic problem; every system of the body is affected. So hormones, anything connected to a gut is the absolute ground zero. There’s the center. When you start there and branch out, you’ll find so many amazing things healed that you didn't have to address later because it all starts there.

DR. CRAIG: I love how you bring up the gut. There's a lot of new research that I’ve been looking at, and I’ve written about this a little bit recently on my blog, that's showing that gut issues and particularly small intestinal bowel overgrowth (SIBO) is the main driver in some of the symptoms of fibromyalgia, and some even say it could be the ultimate cause of the illness. So does your experience and your research support this theory that the gut is at the center--the driving force? Or what do you think the main players are in this condition?

SUE: I would say absolutely. And I would have said 5 years ago, I'm not so sure. As I progress, as I read more, as I experience my own, and now even more importantly, as I experience the collective information I receive from clients--over and over and over again there is this huge connection between the digestive system. Leaky gut is a precursor when most people don't even know they have it, and then leading to that whole autoimmune reaction. I know fibromyalgia is not autoimmune however, it acts like it, and it behaves like it.  There are overlapping conditions with it and more importantly, what heals and benefits autoimmune conditions also heals and benefits fibromyalgia.

DR. CRAIG: Absolutely. So addressing the gut is going to be a key component of your treatment approach, but you also talk about a restoration trio for health. Is gut part of this trio? What are the components of your trio?

SUE: Yes, and the reason I always bring it back to this is because I want to express that it is not one thing. People are all, we’re kind of taught that there is a pill for every ill thing. You have this one pill that does this one symptom and it's a big paradigm shift to look at doing some really fundamental things that can heal so much--heals more than one thing. So for me, nutrition was the first thing I put in place, and absolutely that has everything to do with gut health and restoration. So nutrition is one of the restoration trio. Fitness and body movement, is number two. That means you have to move in some way every day to your mobility issue levels but in some way, you need to move because of detoxification, and so many more reasons. Fitness is part of it, the nutrition is part of it, and the third key is the last thing for me figure out, it is emotional wellness. That's a pretty wide scope that includes sleep, it includes stress management, it includes emotional traumas. There are all sorts of things that fit into that emotional wellness category. That was the last piece of the puzzle for me to figure out. I got so much benefit from nutrition and just moving my body that I thought I was just about healed. It wasn't until later I realized that that mindset piece--that emotional wellness peace--actually did for me and I found exponential recovery after that.

DR. CRAIG: I do want to ask you more about that but first I want to talk about the first pillar and that's diet. That is something that I focus so much on with chronic fatigue syndrome, and that was the key thing for me in my lasting recovery. So part of the diet you talk about in your book is an anti-inflammatory diet, so what does it mean to eat anti-inflammatory? What does this look like?

SUE: Well it looks like eating foods from the very basic category of the macronutrients. A lot of people don’t understand that they're really what the body needs. We can get nutrition from healthy veggies, healthy proteins, healthy fats. It's really not all that complicated. There thousands of varieties of veggies, there are tons of different proteins, and there are amazing healthy fats. When the body gets what it needs in the right balance, and that does take some tweaking, when the going gets what he needs, it is absolutely unbelievable how the body can begin to heal from that. So that's really an evolution because I couldn't start there. I started by just removing wheat gluten, although at the time I didn't know that's what I was doing. There was no research, there was no talk about that, way back then. But I started by doing that, drinking water, and some really basic things. Diet is always going to be evolutionary. If I looked back at what healed me 10 years ago now, that wouldn't be clean enough. So it's just a constant progress.

DR. CRAIG: A lot of people are turning to diet as an intervention and trying various diets--some of them very strict, some of them a little out there in my opinion. No one has really come out and said this is the best diet for fibromyalgia or chronic fatigue syndrome; except people like you and I are trying to do that. I think there is a real need for someone to come forward and say, “Hey, this is what makes sense, this is what works, and this what kind of diet we should use for this illness.” I don't know if you would agree with this: I think without direction and without supervision, a lot of patients are choosing dietary strategies that are potentially detrimental.

SUE: Absolutely, absolutely. And I'm not a big fan of the names that are called. You could say I'm a flexitarian. I have a lot of people who assume I'm a vegetarian. I'm not, but if we look at the names of diets the one that most closely resembles what I do is Paleo. And I do my own version and it is not restrictive at all. It’s very exciting to see the results of what the body can do when it is supported by the nutrition it needs.

DR. CRAIG: And putting a name on a diet is really just out there to help sell books and cookbooks. Really we’re talking about a real food diet.

SUE: Absolutely, absolutely. And I had no idea what the collective abuse my body was taking through processed foods. Eating processed foods over and over I was creating this tornado of angst and I had no idea. And so it’s just unbelievable to look back at what I was eating. I can't believe I was existing. When you think about how easy it is, you don’t have to do everything at once, but how easy it is to pass on foods bagged, boxed, canned--and you look at real natural foods. The first thing to do is add those in because when the body starts getting what it needs, you naturally will weed out the things that you don't need.

DR. CRAIG: So why do you think that the experts and the leaders in this field, both in fibromyalgia and chronic fatigue, are so reluctant to come out and say... make some suggestions about dietary interventions? I really think that you and I have both agreed that diet should start the foundation of recovery. So why are clinicians so skeptical and reluctant to start preaching this dietary wisdom?

SUE: I have an opinion; I have an opinion on everything. From what I find it depend on what practitioners you're talking about. If you're talking about naturopaths, holistic nutritionist, holistic health care practitioners, certainly chiropractors, these are people who are more versed and better understand not only nutrition, but they understand the individual's metabolism. If you look at an MD, if you look at a registered dietician, if you look at what they are taught and how they are instructed in the topic, it is completely different. They're taught that these nutrients come and it wouldn't matter if you got it in a pill or if you got it in a real vegetable. There’s is more of a one-diet-fits-all or a one-nutrient-fits-all. So the nutrition does something for everyone. We are such an individual creation that that can't possibly be true. So, even though the nutrition basics are the same; we all need the same macronutrients, we need them in different varieties, we need them in different balances, and we are all constantly tweaking our own individual-ness. That in and of itself says why you can't get that information in a general practitioner’s office. They don’t have time for that, they're not versed in that, and it's not a simple thing they can write down on a square of white paper and hand to you.

DR. CRAIG: Yeah, exactly. And another thing, I think few people understand that the foods we eat can actually contribute to the pain. How do you communicate that with your clients that what we eat is causing your pain?

SUE: First of all, right on my own website on my homepage: rebuildingwellness.com, you can find a downloadable guide called, “Stop Feeding Yourself Pain.” I like to point out what hidden sources of sugar, sugar is just one of the components. I like to point out what hidden sources of sugar there are in the foods that more than likely you’re eating and how that contributes to pain. So when the digestive system is imbalanced, that spreads throughout the body--again that whole systemic issue--so that causes dysfunction and dysfunction causes pain. It is such a clearly defined chain.

DR. CRAIG: That's great, I will post a link so people can go and download that great resource. So that's our first trio in the restoration trio diet. Your second trio is movement... Now, one defining difference between fibromyalgia and chronic fatigue syndrome is that exercise is better tolerated in fibromyalgia patients. So you're talking about healthy movement and it’s was a key part of your own recovery. How can fibromyalgia patients listening out there choose exercise safely and effectively?

SUE: It’s such a hard question. What I think works best--and of course this is what I do now--is having a guide; having someone go through it with you because you need to be challenged. However, you need to be safe. If left to the individual, you're not likely to press it; you're not likely to challenge yourself to do more and more. It takes looking at what your mobility issues are. There are yoga practices you can do from a seated position in a chair where you're only moving upper body. I'm a big fan of the rebounder, I’ve been doing that for almost 15 years and it is nonimpact. There are basic things, I don’t know if you've heard of T-Tapp exercises (t-tapp.com). She has amazing exercises that are for everyone, but she has segments that are for those with mobility issues and there are a lot of resources out there. The thing is, it has to be something that you buy into as important enough to make it happen. So if you can sit in a chair and do exercises that move your upper body and roll your shoulders, and roll your head, and you do it for one minute, tomorrow you could do it for 3 minutes. The goal is to track what you're doing, write it down, bury it, and connect with some sort of accountability partner so that you have support and encouragement to do more-- to make changes, to progress. It's something that takes effort. I have an article at Prohealth about motivation: it's not something that you have or don't have, it’s something that is built upon successes. So it’s the small successes that build up motivation. It's absolutely vital; it’s vital for mood, detoxification, obviously for strengthening, toning, building your metabolism. There are so many reasons why it’s important. The most important thing about the restoration trio is you can't skip one. You absolutely must clean what you’re eating, you absolutely must move in some way every day, and you absolutely must address your stress issues--your emotional wellness issues. They’re not interchangeable. You can start with either or all, but you can't skip one. A lot of people would like to skip the fitness one and I get it.

DR. CRAIG: It's like you've created a three-legged stool here with this trio: diet, movement, and emotional wellness. So if you're missing one leg on your stool, you know you won't make progress.

DR. CRAIG: You’ve created 2 interesting products related to the pain in fibromyalgia. You call them the FibroFrog and the FrazzleFrog. Tell us more about these 2 cleverly named products?

SUE:  It is actually the same product just 2 different names because of the fibromyalgia market and the rest of the world. They are amazingly helpful for stress management, for digestion, and for pain management…among other things. So it's just a simple frog that’s filled with a natural grain and I always say only the good use of the grain. You heat it up, put it on your abdomen or wherever you like, but when it is on your abdomen, there is a sense of wellness from that heat that distributes through your body. You lie down, you relaxed with it, and you can feel your blood pressure lower, you can feel your anxieties lower. There are many uses for it, you can warm it up at night and throw it in your bed so that it's warm when you get in. It’s like the olden days using a water bottle but you don’t have a spill or water. The reason I made it obviously is to be make fun of having fibro fog so that’s why it’s called FibroFrog. The reason I made it is because I thought it was cute. If it’s sitting on your desk, if it’s sitting on your nightstand, if it’s sitting on your shelf or your mantle over your fireplace, you're going to see it and you're going to do it. No treatment or practice works if you don't do it. So it's just simple. My husband will come home some days, and he is so frazzled, and he’s got all this stress going on. He’ll see me pick up the frog and warm it up, and he’s like: ugh! I’ll make him lie down with it because there’s just nothing like spending 7 minutes, 15 minutes, whatever you can do. Lie there, let the heat work through your body, and feel that stress ratchet down.

DR. CRAIG: Okay, we’ll definitely check that out. Is there any other type of bodywork that you recommend? This is kind of like a heat, massage world. Have you found any other sort of bodywork, acupuncture, chiropractic, or anything like that to be helpful for fibromyalgia patients?

SUE:  Absolutely. I certainly have found chiropractic useful. I've done that for many years. As far as acupuncture goes, I keep reading wonderful things and I have clients who have wonderful experience with that. I personally have never tried it because by the time I learned about it and studied it, I was nearly symptom-free. I didn't have the motivation to go try that. There are so many ways you can learn what your specific dysfunctions are. You can work with a health coach like me and go through your own practices. You can work with a practitioner like you. You can work with nutritionist so that you can do more specific testing. There are so many things that you can do. As far as the body work goes, I've heard of Bowen therapy, Reiki... I have never tried those but I've heard great success. You’ll find people, or you’ll read about people, or you’ll read their books and they’ll say this one thing cures everyone. They may have had a radical shift, they may have had a wonderful success with that and I'm thrilled about it, but doesn't mean that it is the one thing for everyone. Because there are so many things involved, it could be a wonderful practitioner that they all of a sudden felt like somebody was listening and they got relief and healed. So I just want people to be encouraged and supported and aware that there are so many different practices out there. Any one or a combination thereof can bring you so much further down the road and healing, and that's really what my book is about. The point is fibroWHYalgia is about why did we get sick, and the book is not a how-to on do this, do this, and do this. It's a seed planter. It’s about encouraging, supporting, and educating people so that they can make great decisions for themselves and move forward in their own healing journey and feel that they can do it.

DR. CRAIG: You’re spreading hope and understanding, but this is very much an individual experience for both fibro and chronic fatigue syndrome... Let's move into the third pillar and that's emotional wellness. You frequently point out the opportunities through your own fibromyalgia journey to choose hope over despair. For all those out there with chronic pain, or chronic illness that lasts for decades in a lot of these patients, it is sometimes easier said than done to choose hope over despair. So what strategies have you used to help stay positive on the road to recovery?

SUE: I love that and this is so important. You can't tell someone to be grateful. You can't tell someone to be hopeful. It is an everyday practice that you choose to do one little step at a time. We get at the basic level, we get whatever it is that we're looking for. I'm a really big weirdo about studying the brain and how it works, and the brain is a problem solver. So let's give it a problem that we really want to solve: what is helping me to feel better? What is helping me to think more clearly? What is helping me to have a better digestion and a regular bowel movements? Let's look at questions like that rather than what is it that's making me so sick? Why do I feel so bad? How come nothing works for me? We need to ask ourselves better questions. When we we’re asking ourselves the questions that we don't want the answers to, that's turning us into a downward spiral. I'm always talking about the journey as a spiral--we spiral downward, we spiral upward and it does take effort. It does take practice. Let's ask ourselves better questions. What can I do tomorrow? What can I do today? What can I do with my next bite that can help me to heal in some way? What can I do? Because we can look at what can't I do all day long, and those may be very valid, but they aren’t answering anything. They're not moving us forward and they're not helping. So we look for things for what we can do to move forward. So what we can do is we can have big control over what we’re eating. The next fork-full could be the most empowering action you can take. Once we start moving forward, it’s slow at first, but once we start moving toward the upward spiral--looking at things we can do and asking the questions that we do want the answers to--then we can move into a state of more gratitude, more motivation. And again it's much easier if you have somebody holding your hand along the way—so that accountability partner is really important. Chronic illness is so isolating, and that isolation alone is a negative health risk.

DR. CRAIG: That is a beautiful, positive message for all of our listeners out there. We’re running short on time but one thing I want to end with is the title of your book. I love the play on words: Why Rebuilding the Ten Root Causes of Chronic Illness Restores Chronic Wellness. So what does chronic wellness mean to you?

SUE: I am so into chronic wellness. I will be chronically healthy for the rest of my life. Chronic is ongoing and ever going and it usually relates to something negative. That's why I intentionally used it to reflect something positive. I want to chronically look for solutions and improve my health every day--it's a journey. If I looked at what I did 10 years ago, that's not what I'm doing today. It doesn't mean that I was wrong, those were the steps I needed to do. People get so crushed by making a decision and having it not work and they feel it was wrong. This is not black and white. This is not right or wrong. It's just taking that step, ascertaining if that's the best thing for you, and taking another step. It's not about the right around, so that's the whole chronic wellness is all about- moving; forward in your journey.

DR. CRAIG: Excellent, great. So Sue where can listeners find out more about your work?

SUE: On my website, http://www.rebuildingwellness.com, I am a total social media geek. You can find me all over twitter as @sueinge. You can find me on Facebook that one is under my book title so that's www.facebook.com/fibrowhyalgia. I love chatting with people there, I love adding news and tips, and what's new in the industry. You can find me at www.prohealth.com, I write for them. You can also look up some of the products and services that I provide on my website. I have online courses available, some short little courses. My smoothie jumpstart course, which is an easy way to jump into eating healthier by making healthy blended smoothies. I've got another course on stress management. Those are the things that I enjoy doing: teaching, mentoring, and guiding. It’s my favourite part of what I do, and I'm very grateful for it, I am so grateful for fibromyalgia. I am so grateful for the journey I had. I would never ever have changed my thinking and the way I live life without it. It taught me everything that I needed to know to be where I'm today, and I sure hope to be much further ahead 10 years from now.

DR. CRAIG: Thank you Sue for all that you do and thank you for being here today to share your expertise on this fibromyalgia focus episode. Listeners be sure to check out Sue’s blog and her extensive writing for Prohealth and also her personal website. This concludes another episode of Spoonie radio…