In part two of this powerful episode with Tami Stackelhouse—fibromyalgia coach, podcast host, author, and executive producer of the award-winning documentary Invisible, we learn how Tami’s story mirrors what so many women with chronic conditions experience: dismissal, gaslighting, and a lack of real solutions. But instead of settling, she built a life—and a legacy—of healing and hope. Tami shares how fibromyalgia and PCOS are more connected than we think, why mindset is a crucial pillar of healing, and how her wellness framework can guide anyone feeling stuck in the cycle of symptoms and confusion. We also discuss the importance of self-advocacy in medical appointments, redefining what healing really means, and why it’s okay to want more than just symptom management. If you’ve ever been told to “just live with it,” this episode will light a fire in your soul and remind you: you are not broken—and your story isn't over.
Join the movement! Write the story the doctor never told you was possible.
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Unwritten: Healing Beyond the Diagnosis
→ A free 3-part virtual event hosted by Lindsie
→ Starts October 9th — Register HERE
Tami’s Wellness Summit
→ Fibromyalgia Wellness Summit starting October 13th
→ Focused on thriving through the holidays with less pain and more joy
“Healing is about becoming whole again—not just fixing symptoms.”
“Just because you haven’t gotten better doesn’t mean there’s nothing left to try. It just means you haven’t found it yet.”
“If someone doesn’t believe your pain—it’s time to find a new doctor.”
“Managing is surviving. Healing is thriving.”
(0:02 - 2:22) Welcome back to PCOS Unfiltered. Nourish, heal, thrive. The show where we cut through the noise, ditch the shame, and have the real conversations about healing from the inside out. I'm your host, Lindsie, nurse, health coach, and fierce believer that your diagnosis is just one chapter, not the whole story. Today's guest is someone whose story speaks to the heart of what this podcast is all about, taking back your power and rewriting the script. I'm joined by Tami Stackelhouse, fibromyalgia coach, host of the fibromyalgia podcast, founder of the International Fibromyalgia Coaching Institute, and executive producer of the award-winning documentary, Invisible. Tami's journey started just like many of ours, dismissed, misunderstood, and told to just live with it. But instead of accepting a life of pain and limitation, she turned inward, rewrote her wellness story, and became a leader for others living with chronic illness. If you are over the quick fixes and band-aid solutions and finally ready to rewrite your healing story, I want to personally invite you to Unwritten, Healing Beyond the Diagnosis, a free three-part event I'm hosting starting October 9th. We're bringing together real experts, including Tami, with real solutions to help you write the story your doctor never told you was possible. Be sure to click the link in the show notes for full details and to register. Now let's get into today's episode. We are talking about what fibromyalgia and PCOS have in common, and it's more than you think, how your personality plays a role in both conditions, and why it's time to stop shrinking yourself to fit someone else's version of health. As a reminder, the content shared on PCOS Unfiltered is for informational and educational purposes only. The views and opinions expressed by the host and guests are not intended to serve as medical advice. Always consult with a qualified healthcare professional before making any changes to your diet, exercise, or treatment plan. The information shared is based on personal experience and expert interviews and is not a substitute for professional medical guidance. So grab a cozy drink, take a deep breath, and let's get into it.
(2:23 - 4:28) What does true healing mean to you? So yeah, you are part of the event coming up or depending on when you're listening, you're gonna be part of the unwritten event speaking on October 9th, and there's a reason for that because it's we're talking about healing beyond a diagnosis. So what does that look like for you? Yeah, that's such a good question. You know, one of my, like the the subtitle of my first book, Take Back Your Life, the subtitle is find hope and freedom from fibromyalgia symptoms and pain. And that phrase, hope and freedom, has been with me from the very beginning. I want people to have hope that you can get better and freedom from that fibromyalgia, from your symptoms, from your pain. And I think freedom is, can look a lot of different ways, right? I love the word heal. It's the same like root word as whole. It's the same root word as holy, right? So if you have a spiritual background, like there's some of that in there too. And I think it's really about feeling whole again. And that doesn't necessarily mean that all of your symptoms are gone, right? It means being able to live the life that you want to live. And so I often tell people, I mean, I haven't had any fibro pain in many, many years. My doctor considers my fibromyalgia to be in remission. And when people ask me, you know, does that mean you can do whatever you want to do? The answer to that is actually yes. Not because I can necessarily do all of those things. Some of what has shifted is my desires. Like I'm not going to be going out and climbing Mount Everest. It's not happening. But I do have a client who hikes to Everest base camp.
(4:28 - 7:10) Right? I mean, that's on her list of things I need to do. It's not on mine. So I think true healing is, yes, we've got to fix some things that are going wrong in the body. But I think we also have to fix some things that are going wrong in the mind, right? And how we see ourselves and what our expectations are for what life is supposed to look like. And sometimes that means finding new ways to get the same fulfillment, right? There's many paths to the same feeling the same, you know, fulfillment or whatever. So like I said, I think I think true healing is fixing some things that are going wrong in your body. But I also think it's, it's changing our mindset thinking changing about how we think about our bodies like we already talked about, you know? Yeah, yeah. Yeah. I mean, that's so true. Like to me, I feel like I personally and I, you know, as I talk to people, it's always like quality over quantity for me, you know? Because yeah, like you said, it does look differently. I'm actually working on my first book, can depending on when you're when you're listening, it might be out already. But it's I intentionally throughout the book, use the word healing, you know, or like reversing symptoms, not just managing because like that, to me, like we talked about, you know, at the beginning, just means you're stuck with it, and you're just managing it. And so I intentionally have used the word, you know, healing, in some form or another, you know, healing thriving, you know, throughout throughout the book, same thing with the title is podcast, you know, it's not just PCOS unfiltered, it's nourish, heal, thrive, because, yeah, like beyond that thriving, you know, again, to what you consider thriving and being a better, you know, better quality of life than than what you're diagnosed with. Absolutely, absolutely. And I think all too often, we are not offered that. Right? It's just about managing. And I think most of us as patients, we want more than that. And it's okay to want more than that. I think sometimes we even feel like we shouldn't want that, like, just be grateful for what you have kind of a thing. But it's absolutely okay to want to feel better. I mean, yes, my fibromyalgia is in remission, but I'm still working for better, right? Still working on better sleep, still working on more movement still working on how can I make my my what I eat, healthier, right? I think we all can strive for for better.
(7:11 - 10:57) Yeah, not give up that that hope for better. Yeah, yeah, it's like, it's always at the forefront of your mind, you know, I've had my own healing journey as well. And it's just it's not something it's not something you obsess over. But it's something that you do make more of a priority than you, you know, then at least for me than I probably used to, or in a different way, I should say, you know, I just focused on the fitness side. And now it's heavy into stress management nutrition. Yeah, it's always it's always, always something to work work towards. And it definitely it doesn't happen overnight either way. So that's another thing you have to just kind of learn along the way. You've trained and coached others through your fibromyalgia wellness framework. So what pieces of that framework could also help someone with PCOS who's feeling stuck? I would say most of it, actually. So the framework itself, we start off with assessing, right. So we use something called the fibromyalgia impact questionnaire to really assess like how severe is your fibromyalgia? What are you know, what's our starting point? We use the fibromyalgia wellness style quiz, of course, so we know how how to interact with you. And we also look at like, what's important to you? What do you want to get back to in your life? And while the fibromyalgia impact questionnaire doesn't directly relate to PCOS, I think the other bits definitely do. Really being clear on what it is that you're trying to achieve, right? What does better look like for you? What is the life you want to get back to? Because without that, there's you're just sort of flailing around in the middle of the pool, right? Where are we going with this, right? So that's the first part. The second part, of course, is making that plan, which is what I was just talking about. You figure out where you're going and then we make a plan to figure out how to get there. And with fibromyalgia, of course, we've got some very specific things that we need to look at. Like we might need to have a sleep study. We might need to have our thyroid checked. Like there's a lot of things there and I'm sure same thing with PCOS. There's certain things that you want to check and so you can figure out your plan, right? Like if I have Hashimoto's, I'm gonna do something different than if I don't, right? So we make that plan. The third part of the framework is working that plan. Usually with someone else, with a coach, it is really hard to make some of these changes all on your own, right? It's just really hard to do that. We can't see our own lives the same way we can see somebody else's, right? Because we're in the middle of it, right? So we do that. And then for me, the fourth part of the framework is what I love the most, which is taking then what you've learned and passing it forward. And that passing it forward could be as simple as offering somebody that you just met a little bit of hope that there is the possibility of feeling better. You can also become a coach, right? Like there's a full spectrum there of what that help looks like. But I think it's an essential piece of really getting better, right? It's kind of like the AA thing, right? You walk the stairs yourself and then you help somebody else and that's what really makes your healing more solid, right? Yeah. Yeah. Bring in accountability.
(10:57 - 12:18) Yeah, yeah, exactly. Exactly. And so while I think that there are some very medical specific things, right, that would not apply fibro to PCOS, a lot of a lot of what we work on are things like sleep and managing the energy that you have, shifting your mindset, practicing good self care, you know, all of those things, us managing us, right? There's a lot of that that's going to be very similar. Well, the specific medical pieces are a little bit different. Yeah, yeah. Tying into that, you know, kind of nervous system regulation and stress piece causing inflammation and, you know, kind of becomes a vicious cycle at some point, you know, because then you're not getting enough sleep and then you need the sleep though, to heal and do all the things and yeah, yeah, right, right. And everything plays together, right? It's not just like, fix this one thing and you're done. You just have to like, pick one thing, break the cycle. And then yeah, and then you keep going. Yeah. So this question is pretty much about your topic for the unwritten event. But touching a little bit on it, how can someone become a better advocate for themselves and medical appointments? I mean, this is huge, you know, especially like I said, with my medical background, as well.
(12:19 - 22:30) Because I think a lot of us don't know when, what to ask, you know, and be the advocate that they need to be. So what would you say? Yeah, there's obviously this is a this is a deep topic. So we'll talk about it more. Come to the event we're talking about. But I think when it comes to being an advocate, first of all, what we have to do is we have to educate ourselves. Right? If you don't know enough about whatever it is that you're dealing with fibromyalgia, PCOS, whatever it is, right? If you don't know enough, to be able to evaluate what's being told to you is this, is this really something I want to do or not, whether it's a medication or a treatment or you know, whatever it is, you've got to know enough to be able to judge that and say yes or no, right? We also need to remember that no one knows your body better than you. You're the only one living in there, I hope. So nobody can tell you, no, you don't feel that way. You do. And I think, you know, if I could sort of sum up my whole talk in a nutshell, it's it's that, you know, believe in yourself. And if somebody else doesn't, it's time to find a new doctor. Yeah, right. Like, it just I think we need to stop accepting bad doctors. Right? I think too many times we go into appointments and we're like, Oh, doctor, you know, it's almost like we we treat them like they're gods. Yeah, they're the authority figure. Yeah, when it comes to medicine. Yeah. But we need to treat them a little bit more like restaurants. Right? If you go to a restaurant and you have really bad service and you wait forever before they even seat you or bring you your food or it's the wrong food or they're rude to you, you post a review. And you don't go back. Right? Yeah. But but that's not what we do with our doctors. We get treated that way. And we go back and we need to we need to stop doing that. So we'll talk a lot more about like some of the specific details for things that we can do specifically to advocate for ourselves. But I think that's really like the bottom line. Yeah, yeah. Yeah. Educating yourself about about whatever it is. I mean, I get after my dad, you know, I'm like, why is the doctor ordering this test? I don't know. You know, like, what are the what are the risks? You know, what are the risks for this medication? What are you know, what are the side effects? Right? And he's like, he just told me to take it. I mean, and I used to see it in the ER, too. I asked them, you know, why they're taking certain medications. And the response would be because the doctor told me to, like, you're putting something in your body. And you don't understand the full effect. So yeah, education, definitely. First, I love that. Can't wait to hear more about all the rest of it as well. What advice would you give to the woman listening right now who feels like she's tried everything and nothing is working? Nothing works, she feels stuck. And I mean, this could be in relation to you know, fibromyalgia, PCOS, whatever it is, because I think whether you have a diagnosis or you don't, there's still a lot of them out there that feel like they've just tried everything and get pulled in every which direction. So what advice would you have for them? Yeah, absolutely. So I think, I think whenever somebody is feeling that way, like I've tried everything, there's nothing else, nothing is working. That doesn't really mean you've tried everything. You've just tried everything you know. And you've tried everything maybe your providers know. And unfortunately, they don't know everything either, right? Our poor primary care physicians need to know this much about everything. Exactly. Right. And so they don't have the depth of knowledge for everything, everything, right. So when it comes to something like fibromyalgia, you know, obviously, I've got classes, I've got coaches, like this is what we know. My certified fibromyalgia coaches have over 370 hours of education on fibromyalgia alone. Wow. Right. Wow. And chronic pain, I think is something like maybe nine hours. And that's all kinds of chronic pain. So we there, I promise you, there are things you have not tried. Now, obviously, I don't know numbers like that for PCOS. But I imagine it's similar, right? You need to find somebody who really, really like this is the thing they know, this is where they've spent their time. And then you'll find out if you've actually tried everything. The other thing that I want to say with that, too, is I think especially with these invisible illnesses, and especially as women, sometimes our doctors don't dig as deep as they should. And so whenever I'm talking to somebody with fibromyalgia, who has a fibromyalgia diagnosis, and they're telling me all the typical fibro treatments that they've tried, and they tell me nothing works. To me, that's a clue that they've got something undiagnosed, that hasn't been identified and hasn't been treated. Because somewhere along the line, something would have helped somehow. Yeah, right. And I imagine you have things like that with PCOS that like, yes, you have this diagnosis. But if nothing's worked, we're missing something. Exactly. Yeah, you kind of have to make some changes and pivot. And yeah, it really takes a team when you think about, you know, I mean, so I say this, I've said this in other episodes, too. It's like, I don't want to bash conventional medicine, you know, because you still need that side of things, you need the diagnostic side of things. But then like, even kind of like, you know, we were talking about with some of us that need that extra push or need some extra accountability in some way, or need just a more specialized, you know, knowledge base that the doctor doesn't have. That's where Yeah, a coach can come in, or, you know, other modalities can come in. And sometimes it takes two or three of them. Together. Yeah. Yeah, I've got I've got one of my coaches, in one interview I did with her, she talked about the fact that she used to be kind of embarrassed about how many people she had on her medical team. And now she's really, really proud of it. And I love that shift, because it does take a village, right. And even even if you're, we're just talking like traditional medical system, right? Your primary care is great for a lot of things, but you're still probably going to need a neurologist if you're struggling with migraines, right? You might need a gastroenterologist, if you're dealing with IBS, you might need an endocrinologist, like there are these extra specialties. And I think of the work that you do. And the work that I do is just being like another one of those things. Right? We can sometimes be that expert that fills the hole, not that we can treat, we can't diagnose none of that, because we are coaches. But we can fill that gap of knowledge for you. And sometimes even for your providers. Yeah, yeah. I mean, yeah. I mean, that's, you know, again, with conventional, you know, healthcare. Yeah, they're so sometimes hyper specialized. Yeah. Which can be good or good and bad, because then they don't talk to each other. Right? That's, that's the tricky part. Yeah. And so that's where again, yeah, where we can come in as coaches to help with some of that. If you could rewrite the narrative for women with chronic conditions, what would the new story say? Oh, my God. So the first thing is, I would have a medical system that treats us like real human beings. And what I mean by that is, when we tell you something, believe us. Right? Like, if I tell you my pain is a 10, believe me. Yeah, right. Or if I'm telling you that I, you know, that this is, this is severely limiting my quality of life, believe me, whether you can see it or not. Right. So I think that's the the biggest thing is, is having, having providers that treat us with respect, with decency, believe us when we say things to you, trust us when we tell you what's going on in our in our bodies, like that's, that's the biggest thing. Beyond that, I think, I mean, just that one thing would change so much, right? We do also have to have a lot more research, a lot more funding, not to get into the politics of everything, but I, a friend of mine had posted on Facebook a while back that the part of the CDC or the NIH, I can't remember which it was, but the part that studies chronic pain and looks for additional types of treatment options, right, exploring new treatment options was literally down to one person because friends of hers were fired. So this is like direct information. This isn't just something that I read on the news. But things like that, we cannot expect the situation to change for chronic pain patients if things like that are happening. Right? Yeah. So we need to prioritize the, the patients, the research, the how do we make things better? And I think we need to, you know, the the war on opioids, right? It really needs to be a war on chronic pain. The pain medication isn't the problem. The pain is the problem. And if we can address the the pain, there isn't a need.
(22:30 - 22:51) You know, I mean, you probably experienced this in the ER, right? Like most of the people coming in with chronic pain, we just want to not be in pain. There, of course, there are drug seekers there. That does happen. But that is the minority. That's not most of us. Most of us, we just want to feel better.
(22:51 - 26:28) How can we do that? And so, you know, maybe instead of just giving a, you know, some tort all or whatever it might be, and sending them on their way, maybe we get them set up with a spain pain specialist, maybe we get them set up with coaches, maybe we get them set up with support. Because that one, that one moment, it helps in the moment, but it doesn't change things for the long term. Yeah, yeah. Very good stuff. Great points. So last question, what are you working on now? You've Oh, my gosh, and tell us. I mean, I'll put I'll put everything in the show notes. But yeah, I mean, tell us everything you've done. You know, you mentioned, I think, how many books do you have? But my first book, I did a second edition of and actually added more content too. So it kind of feels like three books. Yeah. And then of course, we have the the Institute, I have my own podcast, the fibromyalgia podcast, if you've got fibromyalgia, I hope you'll go check me out. Just look up my name or look up fibromyalgia podcast. We're the top fibro podcast out there. And then I also am executive producer of fibromyalgia documentary called invisible. Depending on where you live, it is available on Amazon Prime. There are other places to get it too. But that is, is it? I'm so proud of that documentary, I provided the money, I didn't actually make the film. But I'm so proud of the way that the the team put that together, because it shows the whole spectrum of fibromyalgia. It shows the people who are really struggling, but it also shows people like me who have gotten better. And I think it's a really great tool to share with like friends and family. If you've got people who don't really understand, it's it's a great resource for that. So we have that out there. And then the most recent thing that I'm working on, you've got your event, but I've got one too. So our fibromyalgia wellness summit is right happening about the same time. I think we start on the 13th of October. But we've got a speaker every day. My coaches, I've got seven different coaches who are speaking, and then I'll do some talks. And we're really like it's our focus right now is on the holidays, right? We're doing it in October. So you've got the information so you can change what you're doing this year. But everything from nutrition to, you know, energy management to being a mom, you know, there's all kinds of different topics from all of my speakers. And our goal is really to help you get through the holidays with less pain and more joy. That's awesome. Yeah, love it. And then yeah, if you're depending on your listening, but we have the unwritten events, my event, October 9, the 16th and the 23rd starts at 6pm. Eastern Time. And if you you can sign up even anytime throughout the event. So again, Tammy speaking on the ninth, but you'll be able to listen the recording even later on if you sign up in the middle of the event. And otherwise you can join live if you're catching this before then and you can sign up it is free to register and I'll put all that in the show notes as well. So that is all we have. Thank you. Thank you so much.
(26:29 - 26:32) Yeah, I love talking to you. It was amazing. So thank you for joining me.
(26:33 - 27:26) Yes, thank you for having me. It's been a pleasure. Wasn't that incredible? Tami's story is a powerful reminder that healing is possible, even when the medical system gives up on you. Whether you're dealing with fibromyalgia, PCOS, or another invisible illness, know this, your body is not broken. It's speaking. And when we learn how to listen, we can finally start to heal. If you want to connect with Tammy, learn more about her coaching programs, check out the invisible documentary, or join Tammy and five other incredible speakers for a very powerful event called unwritten healing beyond the diagnosis that starts October 9. All the links are in the show notes for you. And if this episode lit a fire in you, please share it with a friend or leave a review. It helps more women find this show and themselves in the process.
(27:27 - 27:32) Until next time, keep nourishing, healing and thriving unfiltered and unstoppable.