What do PCOS and fibromyalgia have in common? More than you think. In this powerful episode, I sit down with fibromyalgia coach and advocate Tami Stackelhouse—host of the Fibromyalgia Podcast and executive producer of the award-winning documentary Invisible—to explore what happens when medicine stops asking questions and women start advocating for themselves. Tami shares her personal journey from daily migraines and dismissal by doctors to becoming a health coach who helps others reclaim their vitality. Her and I dig into the shocking overlap between PCOS and fibromyalgia, the shared experience of being unheard and misdiagnosed, and how shifting your mindset from “management” to empowerment can change everything. We also unpack how your personality style affects your healing journey—and why your brain, your habits, and even your inner saboteurs might be keeping you stuck. If you’ve ever felt like your body was the enemy, this episode is your invitation to shift that belief and become your body’s fiercest advocate.
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(0:02 - 0:23) 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.
(0:23 - 0:45) 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.
(0:46 - 1:19) 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.
(1:19 - 1:34) 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.
(1:35 - 2:03) 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.
(2:04 - 2:22) 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.
(2:22 - 2:31) Hello, hello, welcome. I'm super excited to have Tami, honored to have Tami. She's had quite the journey.
(2:31 - 2:42) She's accomplished some amazing, amazing things. And she is a fibromyalgia coach, which I'll have her, you know, talk to us more about. But it's crazy.
(2:42 - 3:04) I didn't even really realize, like, the intersection with PCOS and fibromyalgia until we connected and then, you know, did a little research. I mean, I'm seeing that even, you know, PCOS could be considered a risk factor for fibromyalgia. There's, like, almost a third of women with PCOS that have fibromyalgia, at least according to one study.
(3:05 - 3:10) So, yeah, so it's really crazy. So, super excited to have you here. Thank you.
(3:11 - 3:29) And let's just kind of jump on in. I mean, you've openly shared, you know, how you went from struggling with your own fibromyalgia journey to now becoming a fibromyalgia coach. So, can you walk us through that and at what point, you know, led to your healing? Yes, absolutely.
(3:29 - 3:53) And, you know, like most of us, it's a bunch of little turning points, right? It wasn't just one magic thing that happened and everything was fixed. So, I was one of those kids that my parents used to joke they took me to the doctor for maintenance and my sister for repair because she was a tomboy and she was the one who broke her arm. And, you know, that kind of stuff.
(3:54 - 4:14) But I just, I needed a lot of help just to keep going, right? Now, looking back, if I had been a kid now, I would have been diagnosed with depression. I would have been diagnosed with IBS. I would have been diagnosed with a lot of things that we didn't really even think about in kids back then.
(4:14 - 4:29) But my first real chronic pain diagnosis was migraines when I was in high school. And I remember going to the neurologist and him making the comment, there's nothing wrong with you. You just have headaches.
(4:29 - 4:50) And now I can look back and see what he was really doing was saying you don't have a brain tumor. But what I heard was, what the heck do you mean there's nothing wrong with me? Isn't having headaches every day something wrong? Yeah, exactly. So that was kind of the beginning of my doctor journey.
(4:50 - 5:07) But I was diagnosed with fibromyalgia about six months after I got married, so 2007. And the first couple of years went like most people's diagnosis goes. We're basically trying to manage it.
(5:07 - 5:13) I felt like I was treading water. I wasn't really making any progress. I was watching my world get smaller.
(5:13 - 5:24) And just I remember having this conversation with my doctor. Like everything is downhill from here. I've had this vision of my life and it's all downhill.
(5:24 - 5:41) Isn't there anything that we can do? And that's when she introduced me to a health coach in her office. And it was actually working with a coach that finally started turning things around for me. We also did discover a few other fun things along the way.
(5:41 - 5:55) Like I have Hashimoto's, right? So autoimmune thyroid. I was anemic at the time. I have something called upper airway resistance syndrome, which is similar to sleep apnea. (5:55 - 6:25) So we found all these other little diagnoses. But really the thing that started turning the ship around was working with that coach and finally starting to implement all the things we all hear and that we all know we should do, right? Getting to bed on time, getting good sleep, changing my diet, you know, all of that kind of stuff. So yes, I'm a coach, but I'm a fan of coaching because it's honestly what saved my life.
(6:26 - 6:38) Yeah, that's awesome. I mean, I feel like you hear that so much with being just dismissed. You know, women with PCOS, a lot of women that I talk to and hear from as well, same thing.
(6:38 - 7:04) You feel like you get dismissed. And then it just kind of also you get this diagnosis and it's like, okay, is this going to be my life now? Is this just all there is? Am I just going to accept this? You know, unfortunately, when a physician hands you that they come out with the term lifelong condition or, you know, we're going to have to manage it, but nothing about reversing it or healing from it. Right, right.
(7:05 - 7:25) And unfortunately, with fibromyalgia, and I don't know, PCOS might be the same way, but it's not taught in medical school. So managing fibromyalgia, unless your doctor has gone out of their way to learn about this, they just honestly don't know. And we are bottom of the barrel.
(7:26 - 7:44) We are last when it comes to the number of published research articles. Even though we have way more people being impacted by fibromyalgia, we are last in terms of research. So it just kind of shows that there aren't as many eyes on this as should be.
(7:44 - 7:59) And I feel like you could say whether this was true or not, but I feel like that's also true for PCOS. Yeah, I mean, I don't know how much it's taught, but I would guess probably not. Because I don't even know.
(7:59 - 8:14) I mean, you hear so much. Is it a metabolic condition? Is it a hormonal condition? We're going to get into the psychology of things, but there's all these intersecting things. Plus, those symptoms now, they overlap with a lot of other conditions.
(8:14 - 8:25) They're very similar to Hashimoto's, to the fibromyalgia maybe even in some aspect. So yeah, I do hear that a lot too. I mean, there are definitely more research.
(8:25 - 8:53) I don't know about compared to fibromyalgia, but I am finding a lot more research on it, especially now. I mean, I've even heard recently that they're talking about changing the name of PCOS because you don't even need to have cysts on your ovaries to be diagnosed with it. Yes, and that's the C, right? Yeah, because of that metabolic health with insulin resistance, that tie to it.
(8:53 - 9:22) That's why I think the trend is maybe, okay, you don't even need cysts anymore. So yeah, it's crazy. So were there any myths or just anything that you had to unlearn, change your mindset on with chronic pain or an invisible illness? Yeah, that's the trick, right? People can't see that there's something wrong, and they don't take our word for it.
(9:24 - 9:59) So yes, fortunately, when it came to fibromyalgia, I didn't have some of the preconceived notions that some people do, right? Fibromyalgia can really have a stigma. I know a lot of people that I've worked with have had family members maybe with fibromyalgia, and it was sort of seen as the thing that you had when you just didn't want to do stuff, right? And I did not have that thought. But everything I was hearing from my doctors was get used to your new life.
(9:59 - 10:49) There's not much we can do for this, right? And to be fair, when I was diagnosed, there was not even any medications. The first medication for fibromyalgia came out right after I was diagnosed. So at the time, there really wasn't much that could be done, right? So going in the face of everybody telling you that, right, there's nothing that can be done, get used to your new normal, and somehow still fighting for better, I think, is really a challenge, right? Because especially when it's our doctors, when it's the authorities, so to speak, right, that are telling us this is what it is, and to go in the face of that and continue on anyway.
(10:50 - 11:33) But I would say that the biggest thing that I had to unlearn was actually seeing my body as my teammate instead of my enemy, right? So being that kid that grew up always having something wrong, right? I always felt like there was the real me inside, and I was stuck inside this body that just wasn't working right. And I remember at one point just sort of talking to God and being like, hey, if this was a car, I would have qualified for the lemon law by now. Isn't there something we can do, you know? Exactly, exactly.
(11:33 - 12:02) So I really had this sense of there's the real me, and then I'm fighting against this body that won't work right. And it wasn't until I got married, I can thank my husband for this little shift, I was complaining about my body and all the things that we girls sometimes do, right, about not liking what we look like or whatever. And he looked at me one day and he said, you know, every time you say that, you're putting me down.
(12:03 - 12:15) What? This isn't about you. What are you talking about, right? Yeah. And he's like, I think you're beautiful. I chose you. And when you say things like this, you're basically calling me a liar. Yeah.
(12:15 - 13:26) Right? And so that was really the thing that got me to start thinking a little bit differently and really realizing that, you know, our bodies want to feel better too, right? My body is made to heal herself, right? We get cut, we break a bone, we get sick, we get better, right? Like our bodies are designed to heal that. And looking at my actions, I could see that I wasn't really supporting that, right? Because I was fighting against my body so much. So for me, that was really the first big shift, because that is sort of the foundation for everything, right? If you feel like your body is the enemy, you might not be giving it the love and care and support that it really needs for it to do its job and heal and be there for you, right? Yeah. Yeah. I mean, you said a lot there too. I mean, great stuff, because even back to my ER days, I remember seeing women, you know, coming in with fibromyalgia.
(13:26- 13:32) And I say women, you know, it is predominantly women, right? Yes, it is. But men are diagnosed. Yeah.
(13:32 - 13:40) Yeah. But I remember more women than anything. But coming to the ER and like, we just didn't really know what to do.
(13:40 - 13:53) We didn't know how to help them. You know, it's just like, okay, we give them a little bit of pain meds and, you know, send them on their way. But I love what you said about, I mean, it's all about listening to your body and yeah, seeing it as a teammate.
(13:53 - 14:00) And that's one huge thing. I talk a lot about it. I mean, on my podcast, I just feel like it comes up so much.
(14:00 - 14:12) And it was something that I had to learn on my own, you know, health journey too, just to start listening to your body. And I even used to tell my patients that in the ER. I'm like, you know your body, you know, more than anybody else.
(14:12 - 14:24) But you have to actually listen to what it's telling you so that you can, you know, be its teammate and heal. Yeah, that's super, super, super important. And so, yeah.
(14:24 - 14:49) So many of my listeners, you know, that have PCOS, they might even be listening and maybe have some of the symptoms that may not have the official diagnosis, but deal a lot with, you know, fatigue, pain, inflammation. So how does fibromyalgia kind of overlap with some of those PCOS symptoms? Yes. So the four main symptoms of fibromyalgia are widespread body pain.
(14:49 - 15:12) So the thing with fibromyalgia pain is that it moves around and it's not tied to any particular like injury or damage, right? So with something like rheumatoid arthritis, there's actual damage that's happening to the joints. And with fibromyalgia, it's more of a pain processing problem. And so one day it might be your legs hurt.
(15:12 - 15:20) The next day it might be your neck and upper back. And next day it might be your stomach. So it moves around a lot. (15:20 - 15:39) And when you have other sources of pain, one of the real hallmarks of fibromyalgia is that it's an amplifier. So it'll take whatever is going on and it'll just turn the volume dial up. So whatever that might be, right? So that's the first one, widespread body pain.
(15:39 - 15:54) Unrefreshing sleep. There are some doctors who are calling fibromyalgia really a sleep problem because if you're getting great sleep, it isn't fibromyalgia. So it's a real problem.
(15:55 - 16:06) We don't get the same amount of deep sleep. We have alpha brainwave intrusions into delta sleep. So our awake brainwaves happening when we're supposed to be in deep sleep.
(16:07 - 16:17) There's a lot of specific sleep problems with fibromyalgia. Fatigue. So fatigue is one of those overlaps there.
(16:17 - 16:35) And I feel like fibromyalgia fatigue is maybe a little bit worse. And what I mean by that is our capacity for energy isn't even the same. So we have mitochondrial dysfunction.
(16:36 - 16:56) We have less ATP in our cells. So we literally have less energy, and then we burn through it quick. So we're kind of like those old cell phones you might have had in the day, right, where you charge it all night, and it says it's fully charged, and it lasts you 45 minutes or whatever, right? So that kind of fatigue.
(16:56 - 17:10) And then cognitive dysfunction or brain fog. So there's a lot of brain fog that goes with fibromyalgia as well. And there have been some studies that are showing similarities between fibro fog and ADD.
(17:11 - 17:26) So there are a lot of things going on there too. So as you can see, there are some overlaps and then also some ways that fibromyalgia is different. So what I like to tell people, and you can have both.
(17:26 - 17:41) You can have PCOS and fibromyalgia. In fact, I have a lot of clients that are both. But I think the best way to know if fibromyalgia is one of the things that's going on is that pain amplification effect.
(17:41 - 18:04) So if you just feel like my pain is so much worse than it should be, you stub your toe, and now everything hurts, right? Or somebody gives you a hug, and you're like, oh, that was uncomfortable. Those kinds of things, that amplification effect is a very particular fibro trait. Okay.
(18:05 - 18:12) You mentioned the brain fog when you said the overlap with ADD. I was going to say perimenopause. Yes, that too.
(18:13 - 18:26) Because that's also, do a lot of women get diagnosed a little bit later, like into their 30s and stuff? Yeah. So there's probably a little overlap or misdiagnosis there too. Absolutely.
(18:27 - 18:36) And hormones play a role in all those things too. Exactly. Pregnancy brain or whatever, right? That is definitely part of it.
(18:36 - 19:03) Same thing with our energy levels, same thing with pain, fatigue, all of that. And so this is one of the reasons why it's so difficult to get a fibromyalgia diagnosis because there are other things that could cause those problems, right? And we need to just sort of keep looking. And like I said, if you listening are thinking, okay, how do I tell the difference? It's that pain amplification effect.
(19:03 - 19:13) That's one of the biggest differentiators for other things in fibromyalgia. Yeah, like the hallmark symptom. Yeah.
(19:15 - 19:28) So I know that you have a fibromyalgia wellness quiz and it tells you how your personality can influence your... Tell us more about this. I'm excited to hear more about this. Yes.
(19:29 - 19:42) And maybe like why you started incorporating into your practice and yeah, how you got started with all that. Yeah. So this is a fairly recent thing that I've developed like in the last two or three years.
(19:42 - 20:02) But one of the things that I had noticed all along was that, you know, some clients were really able to, you know, do the things I asked them to do, set and then meet their goals. Like they were just really self-motivated. And there were others who just weren't.
(20:03 - 20:23) And it just was so much harder for, right? And I also noticed that there were some people that tended to sort of put their heads in the sand a little bit. Like I don't want to look too deep in that because it might be something bad. And there were people who, you know, were up all night playing.
(20:23 - 20:46) That would be me. Right? I'm not getting sleep because I'm not even in bed yet. And so I really started to think about, you know, what is the difference between these people? And then also just being married to my husband, who's an engineer, and like his personality is very different from mine.
(20:46 - 21:03) In many ways we are complete opposites. But, you know, just really realizing that how we approach our health is different. And the cause of some of our symptoms, I don't mean like the biological cause.
(21:03 - 21:16) I mean like when you end up in a flare, what got you there? Right. And so that's kind of when I started playing with that. And I actually worked with a friend of mine who is a matchmaker.
(21:17 - 21:27) And, you know, he uses a lot of personality stuff in his work. And so we kind of worked together on this. And he helped me with the personality part of it.
(21:27 - 21:43) And I helped with the fibro part of it. But it's based on something called the five factor model of personality. So for the science geeks out there, if you want to, or our psychology geeks, if you want to go check that out, it's the five factor model of personality.
(21:43 - 21:58) And it's measuring your personality on these five factors. And we don't have to get into all of them, but this quiz is based on two of them. And it's the two that are most associated with health outcomes.
(21:59 - 22:06) So one of them is something called neuroticism. I didn't make the names. Don't shoot me.
(22:07 - 22:20) So and it's measuring this, the negative drive that you have. So whether you are motivated by fear or not. Right.
(22:20 - 22:36) And so this is one of the things where my husband is very, very high, and I am very, very low, which is probably good, because if we were both very high, that would not be so great. But so that's one of the factors. The other factor is something called conscientiousness.
(22:36 - 22:45) And I think most of us know what that word means. Right. It's your diligence. It's your conscientiousness. Right. So it's these two axes.
(22:45 - 23:01) How much are you motivated by negative things? And how conscientious are you? And we end up with a grid with four different wellness styles. And so we have the ponderer. We have the perfectionist.
(23:01 - 23:10) We have the prevailer and we have the playmaker. And like I said, our our unique challenges. Right.
(23:10 - 23:23) Like as a playmaker, I am never going to end up in a flare because I did the chores. It's just never going to happen. Like those are easy to say no to for me, but for a perfectionist.
(23:23 - 23:29) You got to get the check, all the list. Right. Got to do all the things and we can't just do it, you know, half-assed.
(23:29 - 23:36) We have to do it at 150%. Right. So the motivations behind are a lot different.
(23:36 - 23:56) And then how we approach fixing that is also different. So again, using those two examples for me as a playmaker, I am awesome at doing things that I think are fun or interesting. If it's not fun and it's not interesting, it's hard for me to do it.
(23:56 - 24:26) So I use a lot of gamification. Right. So going to bed on time is something that I never want to do, but always need to do. Right. And so I have a little app where I check it off every night. If I went to bed on time, you know, it's the, it's the chart with the stickers and the gold stars. Right. And so we, we working within that, we can then identify what your stumbling blocks might be. Right.
(24:26 - 24:41) What your unique challenges are. And we also know then how to motivate you and what is going to keep you going. A playmaker is going to have a really hard time doing things just to do them.
(24:41 - 28:24) So we have to think about how do we make this fun or interesting. Right. And our perfectionists are going to have an easy time doing things, but they're probably doing too much. Right. You pretty much never have to tell me to slow down, but you do have to tell a perfectionist to slow down. So it changes how we coach people. Right. Yeah. Yeah. I've definitely, I've incorporated some of that into my practice as well. I did practice with a guy in high school. You know, and so I did practice with him until somebody had introduced me to kind of subconscious, you know, habit training. And he does hypnosis. And so I actually use his recordings in my program. But it was very similar in the fact of, I mean, even back to my nursing days, I'm like, why can these people, you know, especially the ones that you would see over and over again with the same thing. And I'm like, why can't these people just go home and take care of themselves and do, you know, do A, B, and C. And then in the gym, especially it hit me. Because, you know, it's obviously fitness. But I'm like, why are some people that are coming regularly getting results? Why are some not getting any at all? Or why are those that are maybe getting the results not keeping them? So, you know, like, it's Yeah, and I was like, what is the missing piece here? And so you can talk me a little bit, but so kind of going into that subconscious, you know, to it likes to keep you safe and comfortable. It doesn't it doesn't like to push you, you know, right? So yeah, right. And there's pros and cons to all of them, right. So I talked about my husband being high in neuroticism, right. And, and that is a psychological term. It's not. I'm not saying he's neurotic, even though I am. But there's, there's good to that, too. Right? Because he is, it's part of what makes him a good engineer, because he's always thinking what could go wrong. Right. And I am never thinking what could go wrong. And so you put us together, you get the right balance, right? So, you know, it's not that there is any one wellness style that's better than any other. We just approach life differently. And we need different motivators, right? Exactly. Yeah, I know. Like, I call them saboteurs. You know, you have like the high achiever, you mentioned kind of like the perfectionist, you know, that type of thing. And so like, for me, yeah, like, I know, I'm, I've got that high achiever, saboteur. So I have to be careful, because that will stress me out. Internally, more so than anything. Because I just go, go, and I want to accomplish so much. So yeah, so once you become aware of that, that's, you know, an important piece. So you can start tuning in, you know, like what, like what we were talking about. 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 Tami, learn more about her coaching programs, check out the Invisible Documentary, or join Tami 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 put 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. Until next time, keep nourishing, healing and thriving, unfiltered and unstoppable.