درباره این اپیزود
Fibromyalgia can be “invisible” on paper and still feel all-consuming in real life and that gap is where people get dismissed, delayed, and pushed toward random internet advice. We sit down with Tami, a fibromyalgia coach and long-time advocate, to talk through what patients actually face: the fight to be believed, the loneliness of not knowing anyone else with the condition, and the quiet ways chronic pain can take jobs, hobbies, confidence, and relationships. If you’ve ever wondered why the system has so much healthcare advertising and so little practical support, you’ll feel seen here.
We break down the core fibromyalgia symptoms in plain terms: unrefreshing sleep, widespread pain that moves, fatigue that goes beyond “tired,” and brain fog that can scare people into thinking they’re developing dementia. Tammy explains why fibromyalgia care works best as a full strategy rather than a single fix, including identifying contributors like sleep disorders, thyroid issues, old injuries, and other triggers that amplify the nervous system. We also talk about why medications can help as a stepping stone, but why self-management, pacing, and real education matter just as much for long-term quality of life.
We also get practical for spouses, partners, and family members who want to help but don’t know how. Tami shares why belief is the first form of support, plus tools like the spoon theory to understand limited energy and the reality that symptoms can vary wildly day to day. We close by calling out snake-oil “lotions and potions” culture and making the case for patient power, better messaging, and care that comes from the heart. Subscribe, share this with someone who needs it, and leave a review with the one fibromyalgia question you want answered next.
If you want to reach out to Tami Stackelhouse, feel free to contact her on :
https://fibromyalgiacoachinginstitute.com/
tami@ifcinstitute.com
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So I'm really excited about this show.
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And um I'll say this.
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People who know me know my passion, right?
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We have a we we've created a really good thing that was based on when I was diagnosed with diabetes.
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And I remember being on the road, I had created an activation with Shire and Decada and Heel Together, and Edelman was the marketing company.
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And uh it was funny with that.
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I remember I used to call Edelman all the time, trying to figure out how I could, because they had all these amazing healthcare clients.
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And I remember calling, never getting anywhere, never getting anywhere.
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And then Shire said, Charles, we believe in this RV thing that you want to do, right?
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Which was I created it because I had gone into a public uh a Walmart parking lot, and I thought I saw the big red bus that collects blood.
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And I said, Man, with all the millions of people living with diabetes, why isn't there a collection thing like this for diabetes?
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Why aren't we testing people in parking lots?
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So I reached out to them and I had done some other work with them too as well on a documentary that I was putting together, and they said, Charles, we love it.
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So next thing you know, uh they're flying me to New York, and guess who is the marketing company?
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Well, the same ones I was calling who wasn't picking up the phone before.
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And uh I I kind of I kind of let them remember that too, as well, but in a nice way.
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But uh it was ironic how things come 360.
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So, but I created that because I realized I wanted to be able to educate millions of people in one fall swoop.
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And I thought the best way to do that was with a television series that someone in the comfort of their own homes could sit down and say, wow, that's what I'm dealing with, and not have to navigate this crazy healthcare system.
00:02:04.640 --> 00:02:07.200
Um I'm waiting to see my urologist been two weeks.
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I'm like, why do I have to wait two weeks?
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Um, you know, and uh so if we if we created an energy where they could be educated, have all the experts there, and and inspiration too as well.
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You know, inspiration is key.
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The research is amazing.
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You know, all the other things that are going on are amazing.
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But when you talk to someone who is dealing with, and this show is going to be about fibromyalgia, but when you talk to someone who is dealing with a condition and you hear that they were curled up in a ball and in pain, or they're dealing with mental health, or they're dealing with financial issues, or they're dealing with, you know, marital issues because of the condition, that research that may happen in 10 years doesn't help them at times today.
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So that's why we focus on this.
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And when I finished the menopause series, it was kind of like I had people reaching out saying, Charles, can you do something on this?
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And I thought, you know what, let me look into this.
00:03:08.639 --> 00:03:15.360
But I also have a few people who I dearly love who are living with that that are very close to me.
00:03:16.479 --> 00:03:28.159
And um and I also focus on conditions that need more attention because I am forever trying to understand why there's billions of dollars in healthcare advertising.
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There's over$23 billion in digital healthcare advertising.
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And almost all of these conditions have little to no exposure or uh reach, right?
00:03:39.280 --> 00:03:47.520
So this morning I woke up and uh I was I was so excited about this one company that this doctor had connected me to.
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The CEO even sent me an email.
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And I thought, wow, you know what, man, they they just released this great product uh for for fibromyalgia.
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And I'm thinking, you know, I saw I saw the CEO on a couple of YouTube.
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I'm thinking, this is gonna be a good fit.
00:04:03.680 --> 00:04:10.000
You know, let's, you know, they've they've got something that could help women with with this condition.
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And we produce these loving, beautiful shows.
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We we don't have any, I'm not pushing an agenda.
00:04:15.759 --> 00:04:18.639
This is all about education and information and inspiration.
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We're not selling anything, we're not pushing anything.
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It's it's for the people to give back to the people.
00:04:25.120 --> 00:04:29.920
And uh I sent over like two or three levels, and I'm like, okay, they could bite on one.
00:04:30.399 --> 00:04:36.240
And then got the email today, this morning, where I'm like, just deflated because we work so hard.
00:04:36.319 --> 00:04:40.720
And somebody sent me something the other day, it was on LinkedIn, and and I had shared some frustration.
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And they said, Charles, you're not frustrated behind doing the shows because you do amazing work.
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You're frustrated that uh certain people don't see it or don't get it.
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And I'm like, You're so right.
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You're so right.
00:04:56.959 --> 00:05:00.959
So when we come to these companies and we say, hey, listen, we've got something.
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You're dropping tons of money with ad agencies and PR companies and all of this stuff, and and we've got something that literally it's it's lunch money for you.
00:05:12.240 --> 00:05:12.879
Lunch money.
00:05:13.600 --> 00:05:14.720
And they pass.
00:05:15.439 --> 00:05:21.199
And it leaves me wondering really what what this business is all about.
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Because it's really about making sure you could still make a ton of money, and you will, but the education and the inspiration is so important.
00:05:32.639 --> 00:05:38.079
So today we're talking about fibromyalgia, and I've got a lovely lady who she gets it.
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She get it, man.
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If she was in charge of a company, uh, we would we would do we would all be doing really well.
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Tammy, how are you?
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I'm good, and you are so right.
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I'm over here, yes.
00:05:52.720 --> 00:05:54.959
Oh man, Tammy, Tammy, Tammy.
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So I I I had my little rant, and uh uh, but I want to get into you and your advocacy and your work and how you got started.
00:06:05.600 --> 00:06:07.519
And I love your personality.
00:06:07.680 --> 00:06:09.920
I love I love your passion.
00:06:10.079 --> 00:06:21.439
I love, I love how you've embraced from probably seeing some of my work and and also enjoying my passion too, as well, and how you have embraced what we're we're we're trying to do.
00:06:21.600 --> 00:06:32.000
And and and and and before we start, I I wanted to, I would love to know what you saw and what we do that made you say, man, I want to I want to get behind what Charles is doing.
00:06:32.399 --> 00:06:35.199
Well, I mean, you kind of just put your finger on it right there.
00:06:35.360 --> 00:06:37.920
You know, the passion um is a big part.
00:06:38.079 --> 00:06:53.120
I mean, there there is a big difference between the people who look at fibromalgia as a way to make money, and those of us who look at fibromalgia and want to help the community.
00:06:53.360 --> 00:06:55.439
I mean, yes, we have to make money too.
00:06:55.519 --> 00:07:03.439
I mean, I run a business, you know, it's it's the business that funds things like the podcast and the conferences we do and all of that.
00:07:03.680 --> 00:07:09.920
But there is a big difference between this is this is how I'm gonna, oh, these are people I can make money from.
00:07:10.160 --> 00:07:12.639
And I have a heart to help these people.
00:07:12.800 --> 00:07:17.199
And in you, I saw the heart to help our community, really.
00:07:17.600 --> 00:07:19.600
Yeah, yeah, I appreciate that.
00:07:19.759 --> 00:07:24.480
And you saw, and and with some of the trailers and the clips, how did you enjoy?
00:07:24.879 --> 00:07:32.560
Did you see the messaging and how we could bring women together who were living with this condition and focus on telling the stories?
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Yeah, absolutely.
00:07:34.319 --> 00:07:46.879
I mean, it it had that feeling, like as a patient, we some often will get when we go to like a support group meeting or my alumni uh retreats, right?
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Where you're in a room full of people who actually understand you.
00:07:51.199 --> 00:07:53.600
And that is huge, right?
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Most of us with fibromalgia don't really know other people with fibromalgia.
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They're out there, we just don't know who they are.
00:08:01.279 --> 00:08:13.360
And um, that was the thing that I loved most watching your stuff was that it had that feeling of, you know, I'm gonna be in the same room with people who get me.
00:08:13.600 --> 00:08:15.279
Yeah, you know, yeah.
00:08:15.439 --> 00:08:22.319
And and it worked so well for a lot of our other uh our other shows, especially with the menopause series.
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I mean, by the time we were done, that those doctors were partying and hanging out, and we were we we had a blast.
00:08:31.120 --> 00:08:41.279
It was a big family, and we had realized that we had done something very special that was never really done before.
00:08:41.600 --> 00:08:48.080
And the people who were the guests there left totally different people.
00:08:48.240 --> 00:08:48.559
Yeah.
00:08:48.720 --> 00:09:05.600
Um, I was just sharing, I said, you know, one of the guests uh hadn't had relations in years, and um they had you know vaginal dryness, and one of the ex one of the experts that we had on, or or the guests that we had on, partners that we had on, had a specific product for them.
00:09:05.840 --> 00:09:07.919
And literally, she was in tears.
00:09:08.159 --> 00:09:11.200
She was just like, Charles, I can't believe this.
00:09:11.440 --> 00:09:25.279
They had finally they had, but just hearing her story, I mean, this woman had gone through, has gone through some stuff, you know, because a lot of the people with menopause also deal with other issues, you know, and some of them are dealing with mental health.
00:09:25.600 --> 00:09:33.039
How have you seen that as far as fibromyalgia, not just dealing with the fibro, but but other issues too as well?
00:09:33.360 --> 00:09:34.000
Absolutely.
00:09:34.159 --> 00:09:37.440
You know, it doesn't ever come all by itself, right?
00:09:37.679 --> 00:09:43.600
There are so many things that come with fibromalgia or even before fibromalgia.
00:09:43.759 --> 00:09:51.600
There's obviously there's the mental health component of I'm living inside this body that doesn't do what I want it to do, right?
00:09:51.840 --> 00:09:53.519
And so who am I now?
00:09:53.679 --> 00:09:55.360
There's a whole lot of that.
00:09:55.440 --> 00:09:56.879
Um, but other things too.
00:09:57.039 --> 00:10:04.639
I mean, autoimmune conditions, we see a lot of those, digestive issues, headaches, like just it's a whole host of things.
00:10:04.879 --> 00:10:12.879
And I actually want to rewind a little bit to something you said when you were talking about the person who got some help, right?
00:10:13.120 --> 00:10:14.080
As part of the show.
00:10:14.639 --> 00:10:26.080
As patients, so speaking as a patient as well as a fibro expert, but as a patient myself, we have tried so many things that didn't work, right?
00:10:26.240 --> 00:10:33.519
And so we are really gun shy of trying something new, particularly if it's going to be expensive at all, right?
00:10:33.600 --> 00:10:39.440
Because we've already invested many of us tens of thousands of dollars over our lives, right?
00:10:40.000 --> 00:11:06.000
But when you hear real stories from other people like you, other patients who found answers, who tried a product that worked for them, who found ways to feel a little bit better, that is worth so much more than all the ads, all the all the infomercials, all the things your doctor tells you in the doctor's office.
00:11:06.240 --> 00:11:13.279
Like those actual patient stories of here's what helped me, here's why I think you should try it too.
00:11:13.440 --> 00:11:15.360
That makes a huge difference.
00:11:15.600 --> 00:11:16.320
Yeah, yeah.
00:11:16.559 --> 00:11:20.240
Tell tell us how you started your advocacy journey.
00:11:20.320 --> 00:11:26.000
Because you know, a lot of people may be living or dealing with a condition, but they never become advocates.
00:11:26.159 --> 00:11:27.840
What, what, what, how was that?
00:11:27.919 --> 00:11:30.240
And how did that whole thing play out?
00:11:30.320 --> 00:11:31.919
And and how has it been?
00:11:32.159 --> 00:11:34.639
Oh, yeah, yeah, it's been a journey.
00:11:35.120 --> 00:11:37.600
So I was diagnosed with fibromyalgia.
00:11:37.679 --> 00:11:39.440
I had only been married about six months.
00:11:39.679 --> 00:11:41.200
It was 2007.
00:11:41.440 --> 00:11:42.799
That was a whole thing.
00:11:43.039 --> 00:11:50.879
Um, and for the first two years that I was diagnosed, it was basically like treading water, right?
00:11:50.960 --> 00:11:52.720
Like I wasn't getting worse.
00:11:52.960 --> 00:11:59.279
I was able to get a diagnosis, I was able to get some help, but I wasn't getting better either.
00:11:59.600 --> 00:12:06.879
And I had this moment where I just sort of saw the trajectory of my life and it was kind of all downhill.
00:12:07.120 --> 00:12:10.240
I'm like, yeah, no, that's not what I want for my life.
00:12:10.639 --> 00:12:16.960
And so talking with my doctor, she actually connected me with a health coach in her office.
00:12:17.360 --> 00:12:21.360
And that was the thing that started to turn things around for me.
00:12:21.679 --> 00:12:29.279
And because that coach was so helpful for me, I decided to pay it forward and I became a coach.
00:12:29.519 --> 00:12:40.000
And so actually, my advocacy work has sort of grown out of my work as a health coach specialized in fibromalgia.
00:12:40.240 --> 00:12:46.960
And over the course of the last, you know, almost 20 years, um, that has grown a lot, right?
00:12:47.120 --> 00:12:49.440
We've we have a podcast now.
00:12:49.600 --> 00:12:54.159
Um we've put on our fibromyalgia um wellness summits.
00:12:54.480 --> 00:13:03.279
I train coaches now, and our training programs are now approved for ANCC continuing education credits.
00:13:03.360 --> 00:13:08.559
So we're gonna start training nurses and other providers and things like that too.
00:13:08.799 --> 00:13:23.440
But honestly, it all started with my own fibromyalgia diagnosis and finally finding help and realizing how unusual that was to actually have help.
00:13:23.840 --> 00:13:36.159
And and when we think of people living with fibro, what what what are some of the main things that you hear regarding any any the issues that they have navigating the system?
00:13:36.240 --> 00:13:37.759
What what what are some of those issues?
00:13:38.080 --> 00:13:45.039
Yeah, so specifically the medical system, the biggest issue is that fibromalgia is an invisible illness.
00:13:45.200 --> 00:13:47.759
You know, you talked about your diagnosis with diabetes.
00:13:47.919 --> 00:13:55.360
You it is also invisible, but you can, you know, take your bloods, you can see what your glucose levels are.
00:13:55.679 --> 00:13:58.320
There isn't anything like that for fibromyalgia.
00:13:58.799 --> 00:14:03.919
So we get x-rays done, we get labs done, we get MRIs done, everything looks fine.
00:14:04.159 --> 00:14:10.000
So the first challenge is just getting somebody to believe you to get that diagnosis.
00:14:10.159 --> 00:14:12.480
So that's that's challenge number one.
00:14:12.720 --> 00:14:19.679
Once you actually do get a diagnosis, doctors are not trained on fibromalgia in medical school.
00:14:19.840 --> 00:14:25.440
Here in the US, we get about nine hours or so of pain management training.
00:14:25.600 --> 00:14:32.639
That's not fibromyalgia, that's not chronic pain, that is all pain, nine hours, right?
00:14:33.039 --> 00:14:39.919
Um, fibromalgia ranks lowest in the number of research papers published in rheumatological journals.
00:14:40.559 --> 00:14:41.039
Right.
00:14:41.200 --> 00:14:44.240
So, so it's invisible, right?
00:14:44.399 --> 00:14:48.480
There's no test to prove that what you're feeling is what you're feeling.
00:14:48.799 --> 00:14:50.960
And let's just say it, right?
00:14:51.120 --> 00:14:56.799
Because it affects more women than it does men, yeah, it also gets very dismissed because of that.
00:14:56.960 --> 00:14:57.200
Yeah.
00:14:57.679 --> 00:14:59.120
Crazy woman's illness, right?
00:14:59.279 --> 00:15:00.240
Yeah, yeah, yeah.
00:15:00.320 --> 00:15:05.360
No, I saw that on the menopause series, you know, and uh it was interesting.
00:15:05.519 --> 00:15:07.840
You know, Rob was was the lone man there.
00:15:07.919 --> 00:15:12.000
He was supposed to be there with his wife, but but she changed her mind at the last second.
00:15:12.159 --> 00:15:20.879
But Rob went because he wanted to save his marriage and he wanted to understand better what his wife is is is is living with.
00:15:21.039 --> 00:15:30.480
And and so so tell us what what it what it's like living with fibromyalgia and and what are some of the symptoms?
00:15:30.639 --> 00:15:34.000
How you know are is there anything that can soothe this?
00:15:34.159 --> 00:15:36.960
Um, are there any medications or treatments?
00:15:37.120 --> 00:15:40.960
What how how do how do how does a woman go about navigating some of this?
00:15:41.279 --> 00:15:43.440
Yeah, so let's start with the symptoms.
00:15:43.600 --> 00:15:46.960
Fibromalgia has four main symptoms.
00:15:47.120 --> 00:15:53.120
There's obviously so much more than this, but the four main symptoms are unrefreshing sleep.
00:15:53.360 --> 00:15:59.200
So we can sleep all night long and wake up and feel like we got run over by a truck, right?
00:15:59.279 --> 00:16:01.039
So unrefreshing sleep.
00:16:01.279 --> 00:16:03.840
We have, of course, widespread body pain.
00:16:04.000 --> 00:16:14.240
But the thing about fibro pain that is a little bit different is that it moves around because it is something that's going wrong in your brain and your central nervous system.
00:16:14.480 --> 00:16:17.679
It's not that one joint hurts, right?
00:16:18.000 --> 00:16:22.399
So one piece of you might hurt one day, another piece hurts another day.
00:16:22.480 --> 00:16:23.360
It travels around.
00:16:23.519 --> 00:16:29.759
This is also what you know adds to the crazy woman persona there, right?
00:16:30.000 --> 00:16:32.159
Because every day it's something different.
00:16:32.480 --> 00:16:33.919
We have brain fogs.
00:16:34.000 --> 00:16:36.080
So there's cognitive issues, right?
00:16:36.399 --> 00:16:45.440
And then um the fourth one, of course, is fatigue, where we just and some of that, of course, is a product of if you don't get good sleep, you're of course you're gonna be tired.
00:16:45.600 --> 00:16:49.440
But it's a different level than just regular fatigue.
00:16:49.600 --> 00:16:50.799
So those are the symptoms.
00:16:50.960 --> 00:17:04.480
And you can imagine, right, if we start from the day, you know, the moment you wake up, you wake up and instead of feeling, ah, rested, refreshed, you feel worse than when you went to bed, right?
00:17:04.799 --> 00:17:15.680
And you have to like get your body moving in the morning, stiff, sore, maybe take your meds, lay back down, hopefully, hope something's gonna start working.
00:17:15.920 --> 00:17:23.279
And then you try to get through your day with a brain that's not working right, without enough energy and with everything hurting.
00:17:23.519 --> 00:17:27.279
Of course, that's going to cause all sorts of problems, right?
00:17:27.440 --> 00:17:32.160
Being able to keep your job, your relationships, all sorts of things.
00:17:32.480 --> 00:17:36.319
And we end up feeling like fibromyalgia.
00:17:36.559 --> 00:17:41.359
Fibromalgia can be this long taking away of everything you love.
00:17:41.680 --> 00:17:48.319
Takes your hobbies, takes your jobs, takes your relationships, everything.
00:17:49.200 --> 00:17:51.759
And there is hope.
00:17:54.720 --> 00:17:55.599
Yeah, yeah.
00:17:55.759 --> 00:17:58.960
You're muted, by the way, if you're if you're meaning to be talking to me.
00:17:59.200 --> 00:18:01.680
Okay, tell us a little bit about that hope.
00:18:02.000 --> 00:18:02.640
Yes.
00:18:03.039 --> 00:18:09.039
So I've I've mentioned a lot of the the the reasons why maybe we don't have hope, right?
00:18:09.119 --> 00:18:12.720
Not enough doctor education research, you know, all these things.
00:18:13.039 --> 00:18:18.240
That said, there is a lot that can be done to improve fibromalgia.
00:18:18.559 --> 00:18:23.839
There are a lot of things that we can address sort of indirectly, right?
00:18:23.920 --> 00:18:26.720
Um, that was my approach after I was diagnosed.
00:18:26.880 --> 00:18:31.759
I will say I have not had any fibromyalgia pain in almost 10 years.
00:18:32.079 --> 00:18:39.680
And a lot of what I did was tracking down any little thing that could be adding to the problem.
00:18:39.839 --> 00:18:50.640
So making sure my thyroid worked right, making sure my adrenals were functioning properly, checking to see if I had any sleeping disorders, I did, treating those, right?
00:18:50.960 --> 00:18:59.359
So one of the things that I do with all my clients and in my classes is really track down what else could be contributing to this problem.
00:18:59.599 --> 00:19:04.880
Because fibromyalgia is an amplifier and it will amplify anything that you're experiencing.
00:19:05.039 --> 00:19:13.119
If you have a bad shoulder that you fell on when you were in sports as a, you know, in high school, it's going to amplify that, right?
00:19:13.279 --> 00:19:16.240
So we need to track all those little things down.
00:19:16.640 --> 00:19:20.799
Then we can also do a lot with our own self-management.
00:19:20.880 --> 00:19:26.960
So learning how to live within your energy budget, learning the clues that your body is giving you.
00:19:27.119 --> 00:19:32.799
Hey, I need to sit down for a minute, or you know, I need this or that or whatever, right?
00:19:33.119 --> 00:19:38.160
Um, there are some medications that help with fibromalgia.
00:19:38.319 --> 00:19:46.240
Um, there were three that were approved in the early 2000s, and then nothing for 15 years.
00:19:46.480 --> 00:19:52.079
We do finally have a fourth that just came out last year, um, which is which is great.
00:19:52.400 --> 00:19:57.519
But um those medications alone are not gonna get you there.
00:19:57.680 --> 00:20:01.039
There was actually a study done on pharmaceutical options.
00:20:01.200 --> 00:20:11.920
I believe the study happened in Italy, but one of the things that they said was no one medication can treat the constellation of symptoms that is fibromyalgia.
00:20:12.079 --> 00:20:15.759
So we really do have to attack it from all sides.
00:20:16.000 --> 00:20:18.480
But I help people feel better every day.
00:20:19.839 --> 00:20:22.400
Naturally, naturally too as well, right?
00:20:22.640 --> 00:20:23.359
Yes, yes.
00:20:23.680 --> 00:20:33.200
You have to look at pharmaceuticals and other traditional medical interventions like that do have a place.
00:20:33.440 --> 00:20:34.400
Yeah, they do.
00:20:34.720 --> 00:20:44.400
And that place is usually to give your body the the stepping stone, the break, so that then the other things will work.
00:20:44.640 --> 00:20:50.000
So I went on a lot of medications at the beginning and then I came back off of them, right?
00:20:50.160 --> 00:20:52.559
Because it gave my body the space to heal.
00:20:52.799 --> 00:20:58.400
I worked on other things, nutrition, pacing, sleep, like all the things, right?
00:20:58.880 --> 00:21:02.240
And eventually was able to come off of most of those meds.
00:21:02.559 --> 00:21:03.440
Yeah, yeah.
00:21:03.680 --> 00:21:04.559
That's awesome.
00:21:04.720 --> 00:21:05.440
That's awesome.
00:21:05.680 --> 00:21:16.079
And uh yeah, I've been talking to a lot of women lately too, as well, you know, regarding the series and um just the lack of of awareness, you know, the lack of education.
00:21:16.240 --> 00:21:28.960
I mean, I'm looking at Facebook groups who have two, three hundred thousand people in these groups, and they're literally asking each other questions about different things in fibro.
00:21:29.200 --> 00:21:34.880
And I'm just like, wow, that we should really the system should really be a lot more.
00:21:35.200 --> 00:21:43.599
You shouldn't be in a Facebook group or matter of fact, I saw a guy today, he said he had prostate cancer for a stage one prostate cancer on Twitter, and he's like, What should he do?
00:21:43.680 --> 00:21:49.039
And and of course, you know, you got everybody talking about ivermectin and this, that, and the other thing, and every crazy thing.
00:21:49.119 --> 00:21:53.200
And people were like, Listen, go find yourself an oncologist or uh or whatever, man.
00:21:53.279 --> 00:21:59.680
Go, go in a urologist or go get yourself, you know, you shouldn't be looking for crazy things.
00:22:00.240 --> 00:22:07.680
On Twitter by people sending you all kind of potions and lotions.
00:22:08.640 --> 00:22:09.039
Right.
00:22:09.279 --> 00:22:09.759
You know.
00:22:10.160 --> 00:22:14.319
So it's it's you know, I see that with a lot of conditions.
00:22:14.559 --> 00:22:27.119
And, you know, it's um it's alarming that that we're not getting that information from you know the experts at times that we have to kind of go out and try things and to that of that effect.
00:22:27.279 --> 00:22:28.799
So you you had mentioned that.
00:22:29.200 --> 00:22:34.000
Are there a bunch of lotions and potions out here that people are trying to push off?
00:22:34.079 --> 00:22:38.160
Or you know, yeah, you know, absolutely there are.
00:22:38.319 --> 00:22:41.440
There are supplements, like you said, lotions and potions.
00:22:41.519 --> 00:22:44.480
It's funny you call it that because that's exactly what I say too.
00:22:44.960 --> 00:22:46.559
The lotions and the potions.
00:22:47.119 --> 00:22:55.200
Um there are so many things out there, and there are there are a lot of things that people are using in interesting ways, too.
00:22:55.359 --> 00:23:00.079
Like things that were never designed for fibromalgia are now, you know, people are using.
00:23:00.240 --> 00:23:11.759
And I think the thing that makes fibromalgia so tricky is that sometimes those things will work though, and and they will work for certain people, but not other people.
00:23:12.000 --> 00:23:14.799
So just you know, Tammy take here, yeah.
00:23:15.119 --> 00:23:31.839
But I I personally think that, you know, in another 50 hundred years, we're going to realize that this big thing that we've been calling fibromalgia is actually a bunch of different things, or maybe there's different types, like with diabetes, right?
00:23:32.079 --> 00:23:35.920
Type one, type two, it's the same, but it's not the same, right?
00:23:36.079 --> 00:23:45.680
I think we're going to see that fibromyalgia is actually that way, which is why some people will, you know, take this particular medication and it changes their lives.
00:23:45.759 --> 00:23:47.440
And other people, it doesn't work at all.
00:23:47.599 --> 00:23:47.759
Yeah.
00:23:48.000 --> 00:23:50.079
Because it's the same, but it's not the same.
00:23:50.960 --> 00:23:54.240
I had worked on a beautiful series called uh Trial by Fi.
00:23:54.400 --> 00:24:01.039
It was based on my mom uh who was dealing with CRPS, complex regional pain syndrome.
00:24:01.200 --> 00:24:08.880
And I've heard a few people say that CRPS and Fibro are almost cousins.
00:24:08.960 --> 00:24:09.279
I don't know.
00:24:09.359 --> 00:24:12.319
Have you have you heard anything about CRPS and Fibro?
00:24:13.119 --> 00:24:16.240
Yeah, not anything like super concrete.
00:24:16.319 --> 00:24:18.720
I mean, I kind of have heard what you have heard.
00:24:18.880 --> 00:24:19.039
Okay.
00:24:19.279 --> 00:24:24.240
Um, with CRPS, like usually you can correct me if I'm wrong here.
00:24:24.319 --> 00:24:30.400
It's not my totally my wheelhouse, but CRPS does usually start with some sort of injury or trauma, right?
00:24:31.279 --> 00:24:39.440
And then your nervous system thinks that that trauma is still happening, even though like the bones, the tissue, everything has healed.
00:24:39.599 --> 00:24:40.000
Yeah, yeah.
00:24:40.319 --> 00:24:41.279
That basically, yeah.
00:24:41.440 --> 00:24:42.400
Yep, yeah, yeah, yeah.
00:24:42.559 --> 00:24:45.200
Yeah, and fibromyalgia is kind of similar.
00:24:45.279 --> 00:24:51.119
We don't necessarily have the same, like I injured my leg and now my leg hurts.
00:24:51.920 --> 00:25:02.079
But there's always some sort of trauma trigger, whether it's an illness or uh abuse or a car accident or a fall or whatever.
00:25:02.160 --> 00:25:04.559
There's usually a trigger of some kind.
00:25:04.720 --> 00:25:08.480
And then it's like this switch gets flipped in the nervous system.
00:25:08.799 --> 00:25:11.519
Where now we're processing everything is pain.
00:25:11.759 --> 00:25:14.079
Doesn't matter if you're hugging me, it's pain.
00:25:14.240 --> 00:25:16.079
If I'm wearing a shirt, it's pain.
00:25:16.240 --> 00:25:22.799
If it's uh injection, you know, getting your flu shot hurts a lot, right?
00:25:23.119 --> 00:25:30.880
So I think there is a lot of similarities in that nervous system component where that switch gets flipped.
00:25:31.039 --> 00:25:33.759
And now we're in a different world.
00:25:34.000 --> 00:25:34.319
Yeah.
00:25:34.559 --> 00:25:35.039
Right.
00:25:36.079 --> 00:25:37.119
Let me ask you a question.
00:25:37.359 --> 00:25:49.680
So if if if you had a magic wand and said, man, this is what I would love to do with my advocacy in the the fibro space, what would that what would that wish look like?
00:25:50.000 --> 00:25:54.960
That as soon as everybody is diagnosed, they get matched up with a coach.
00:25:55.440 --> 00:26:03.519
Uh that's an easy answer because that is where we see people actually getting their lives back.
00:26:03.680 --> 00:26:12.400
It's kind of like when you're, I don't know if this happened for you, but when you're diagnosed with diabetes, often you are sent directly to the diabetes educator, right?
00:26:12.640 --> 00:26:14.240
Let me teach you about your illness.
00:26:14.400 --> 00:26:16.319
Let me teach you how to manage it.
00:26:16.480 --> 00:26:20.079
That's what we do as certified fibromyalgia coaches.
00:26:20.400 --> 00:26:44.720
And so if people can be connected like day one with someone who has walked that road, who knows a way forward, who not only can teach you about your illness, but tell you all the inside little details, like, you know, here's this thing that worked for me, or you know, I clean my counters this way now.
00:26:45.279 --> 00:26:51.359
You know, I mean, it's dumb stuff like that that can actually impact how well somebody lives.
00:26:51.680 --> 00:26:55.440
So if I could wave a magic wand, that's exactly what it would be.
00:26:55.680 --> 00:27:14.480
Um, yes, ultimately, it would be awesome if we could, you know, have our medical system fully support fibromalgia patients the way they need to, but that to me feels like a much taller mountain to climb than like just connect people.
00:27:15.200 --> 00:27:18.799
And and I go back to the series for a second, right?
00:27:19.039 --> 00:27:28.240
And I and I realized also that not only does that infuse, even when I looked at my my first series on on diabetes, I'm like, you know what?
00:27:28.559 --> 00:27:34.160
A series like this can help millions of people say, I need to go get tested.
00:27:34.640 --> 00:27:35.119
Yes.
00:27:35.440 --> 00:27:43.039
And if I go get tested, I might need those medications that this company offers.
00:27:43.200 --> 00:27:48.240
I might need the metformin, I might need the the the what insulin, whatever it might be.
00:27:48.960 --> 00:27:57.759
So even a series like this on Fibro could help infuse the business where women can be led to the right places.
00:27:58.240 --> 00:27:58.960
Exactly.
00:27:59.279 --> 00:28:06.559
And they can find out about this new drug that just came on the market and say, listen, I want to try that.
00:28:06.720 --> 00:28:12.880
Uh, even if it's a hundred thousand that said, I want to try that, that could bring in billions of dollars.
00:28:13.200 --> 00:28:14.880
Oh, absolutely, absolutely.
00:28:15.039 --> 00:28:23.920
And that's one of the things that that as coaches we do a lot of is filling that gap of knowledge, yeah.
00:28:24.160 --> 00:28:30.319
To telling people, I mean, grab your random fibro person on the street.
00:28:30.480 --> 00:28:33.920
They probably don't even know there's a new medication.
00:28:34.079 --> 00:28:34.720
Yeah, you're right.
00:28:35.119 --> 00:28:39.680
And so that's, I mean, talking about things like that on the podcast.
00:28:39.839 --> 00:28:43.279
Here's some things you haven't heard about that you might want to try.
00:28:43.599 --> 00:28:48.559
As coaches talking with our clients, here's some things you maybe you haven't heard about.
00:28:48.720 --> 00:28:50.480
Ask your doctor about this.
00:28:50.720 --> 00:28:53.759
Here's how this helped one of my other clients.
00:28:54.319 --> 00:28:57.119
Talk to your doctor about whether or not that's going to help you.
00:28:57.279 --> 00:28:58.559
Obviously, we're not doctors.
00:28:58.640 --> 00:29:02.160
I'm I'm not prescribing anything, but I can educate you.
00:29:02.400 --> 00:29:06.079
I can tell you about the experiences my other clients have had.
00:29:06.400 --> 00:29:11.839
And, you know, I can also, because I've been doing this for so long, yeah.
00:29:12.000 --> 00:29:16.640
I have a better idea of which things are going to work for which people.
00:29:17.440 --> 00:29:21.279
So there will be some people where I'm like, you need to try this.
00:29:21.440 --> 00:29:23.279
This could really change your life.
00:29:23.599 --> 00:29:26.640
And there's other people I might not mention it to at all.
00:29:27.359 --> 00:29:27.680
Right?
00:29:27.920 --> 00:29:28.720
Interesting, interesting.
00:29:29.200 --> 00:29:38.559
But yes, I mean, like I said, you grab your average fibro person off the street, and the information they have is probably from 30 years ago.
00:29:38.960 --> 00:29:39.599
Wow.
00:29:39.839 --> 00:29:40.240
Wow.
00:29:41.119 --> 00:29:58.960
So how do how does a man who whose wife or loved one is dealing with fibro, how do they how do they understand, how can they help understand what that loved one is dealing with?
00:29:59.440 --> 00:30:07.279
Because I I've seen it where it these these conditions can help destroy marriages or relationships.
00:30:07.519 --> 00:30:19.279
And if someone is maybe not good at communicating, and that person is having, you know, some some you know emotional issues or whatever it might be, I'm sure you know way better than I.
00:30:19.440 --> 00:30:24.960
What what what would you suggest to a man who who's listening to this podcast?
00:30:25.279 --> 00:30:33.519
Yeah, uh, I would first of all, my first bit of advice would be believe whatever she tells you, right?
00:30:33.680 --> 00:30:35.359
Whether you can see it or not.
00:30:35.599 --> 00:30:42.799
I like I said, I was diagnosed six months after I got married, and I'm sure my poor husband was like, Oh my god, what have I gotten into?
00:30:44.559 --> 00:30:46.799
One day I want to interview him on the podcast.
00:30:46.880 --> 00:30:49.200
He keeps telling me you're not gonna like what I have to say.
00:30:49.279 --> 00:30:51.519
And I'm like, Oh no, I know what you're gonna say.
00:30:53.039 --> 00:31:00.400
Six months, uh but you know, like one day I might be like, Hey, can you get me a glass of water?
00:31:00.480 --> 00:31:01.839
I just I can't do that.
00:31:01.920 --> 00:31:02.799
Can you get me a glass of water?
00:31:02.880 --> 00:31:05.039
And the next day I'm doing like whatever, right?
00:31:05.279 --> 00:31:07.839
It looks like you know, she's crazy.
00:31:08.400 --> 00:31:14.240
So, first of all, just just believe her, whatever she tells her, tells you, just believe her.
00:31:14.400 --> 00:31:31.920
And then I do think it can be series like the one that that you're creating are such amazing tools exactly for this, because there is there's something a little bit different when you start hearing the same thing from multiple people, yeah, right.
00:31:32.160 --> 00:31:41.279
So uh a guy sitting there listening just to his wife, it's easy to just kind of put her in a box, like that's just her experience, right?
00:31:41.680 --> 00:31:45.920
But when you see a group of people who are like, Yeah, me too.
00:31:46.000 --> 00:31:47.359
Yeah, this is how it is for me.
00:31:47.440 --> 00:31:50.400
Here's how it is for me, a little different, right?
00:31:50.559 --> 00:31:53.839
You can look at that, it's a whole lot harder to dismiss.
00:31:54.240 --> 00:32:05.759
Um, plus, different people will say things in different ways, and so I think it gives you the opportunity to like have things click because you might be hearing it just a little bit different.
00:32:06.160 --> 00:32:15.039
So I think, you know, watching the the docuseries that we're working on, um, Invisible, the film that that we made, that's a great option.
00:32:15.200 --> 00:32:25.920
Um, there's another tool out there I think that is really, really great for helping people understand the energy part of things, and it's something called the spoon theory.
00:32:26.079 --> 00:32:30.880
Now, anybody who has fibromyalgia who's watching this probably has heard of the spoon theory.
00:32:31.039 --> 00:32:40.480
It was written by Christine Mizerandino, and it just gives sort of this framework to understand what it's like living with limited energy.
00:32:40.640 --> 00:32:45.519
You only have so many spoons, and you have to decide how you're going to spend them.
00:32:45.759 --> 00:32:48.160
So, yeah, that can be really great.
00:32:48.240 --> 00:32:55.519
Um, there's there's just so many things that we can do to help people understand, but the if you start there, that'll take you a long way.
00:32:55.759 --> 00:32:56.079
Yeah.
00:32:56.319 --> 00:32:56.640
All right.
00:32:56.720 --> 00:32:58.720
So a quick couple of quick questions.
00:32:58.960 --> 00:33:01.200
Is fibro a disability?
00:33:01.519 --> 00:33:03.279
It can be for some people.
00:33:03.519 --> 00:33:10.400
So for me, my I'm still diagnosed with fibromalgia, but like I said, I haven't had any fibro pain in almost 10 years.
00:33:10.799 --> 00:33:14.319
For me, no, fibromalgia is not disabling.
00:33:14.640 --> 00:33:21.440
But for a lot of people and me, you know, if I go back far enough, I filed for disability.
00:33:21.759 --> 00:33:24.079
And it absolutely can be.
00:33:24.319 --> 00:33:30.160
So the question about is it a disability or not depends on how it's impacting your life.
00:33:30.480 --> 00:33:39.839
And if it's impacting you in such a way that you can't take care of yourself, you can't take care of your life, you can't do all the things, right?
00:33:40.160 --> 00:33:42.319
Then that is a disability.
00:33:42.640 --> 00:33:45.839
And some people that might be yes, and some people that might be no.
00:33:46.160 --> 00:33:46.880
Gotcha.
00:33:47.279 --> 00:33:51.200
Is fibro a progressive condition or disease?
00:33:51.519 --> 00:33:53.039
I love this question.
00:33:54.400 --> 00:33:59.039
So um diabetes actually is an example I use all the time.
00:33:59.359 --> 00:34:10.159
Like any illness, if fibromyalgia is not treated properly, like diabetes, if you don't manage that properly, it it can be progressive.
00:34:10.239 --> 00:34:12.480
It is going to progressively get worse.
00:34:12.800 --> 00:34:25.360
But when we talk about whether an illness is progressive or not progressive, that term generally means something where it's going to get worse no matter what you do.
00:34:25.519 --> 00:34:29.119
Like this is just this is a downhill situation, right?
00:34:29.280 --> 00:34:33.679
Some types of MS might be like that, Alzheimer's might be like that.
00:34:33.920 --> 00:34:36.559
Uh, I don't think fibromyalgia is.
00:34:36.719 --> 00:34:39.199
I don't think it fits that category.
00:34:39.440 --> 00:34:43.760
However, I do think most people are not adequately treated.
00:34:43.920 --> 00:34:49.199
And so most people do get worse over time, but it doesn't have to be that way.
00:34:49.360 --> 00:34:55.039
It could also get better over time, and that means it's not a progressive illness per se.
00:34:55.840 --> 00:34:56.559
Does that make sense?
00:34:56.800 --> 00:34:57.360
That it does.
00:34:57.760 --> 00:34:58.239
Distinction?
00:34:58.400 --> 00:34:58.639
Yeah.
00:34:58.880 --> 00:35:00.880
Give me some thoughts on brain fog.
00:35:02.400 --> 00:35:05.840
Hopefully, I'm not having any or I won't give you any thoughts.
00:35:07.280 --> 00:35:24.079
Uh so brain fog, it's interesting that you're doing some work with dementia because a lot of people with fibromyalgia, when they first start to experience this cognitive dysfunction, they think, oh no, I'm developing dementia, right?
00:35:24.320 --> 00:35:36.000
Because you can't access memories, you're remembering things wrong, you leave your keys in weird places, you drive the wrong way down a run, wrong down a one-way road.
00:35:36.159 --> 00:35:39.920
I had a client that did that with her three-year-old daughter in the car.
00:35:40.159 --> 00:35:44.320
Um, these kinds of things can be very, very scary.
00:35:45.039 --> 00:35:52.800
But the difference with fibromalgia brain fog is that again, it's not progressive, it's not degenerative.
00:35:53.039 --> 00:36:03.760
So if we can properly treat fibromalgia, give the body and the brain the right support, whether that's supplements, better sleep, all the things, right?
00:36:04.159 --> 00:36:05.360
Your brain will work again.
00:36:05.519 --> 00:36:06.639
It'll come back online.
00:36:07.039 --> 00:36:10.480
But it can feel and look very much like dementia.
00:36:10.800 --> 00:36:14.960
I've heard a couple people mention degenerative disc.
00:36:15.760 --> 00:36:16.800
Have you heard about that?
00:36:17.119 --> 00:36:18.800
Any thoughts on that one?
00:36:19.119 --> 00:36:34.400
I have had so many clients that that's how their fibromyalgia started, whether it was a car accident that injured their back and then ended up with degenerative disc disease, or whether it's genetic, it is the source of pain.
00:36:34.559 --> 00:36:39.840
It's the trigger that flipped the switch in your nervous system, right?
00:36:40.079 --> 00:36:55.679
And so, yes, we can work on the fibromalgia, the amplification part of things to make sure that that pain is not being amplified, but we also have to work as best we can on the actual issue, the degenerative disc disease.
00:36:55.760 --> 00:36:59.039
And sometimes you can fix that, sometimes you can't fix that, right?
00:36:59.199 --> 00:37:00.639
Degenerative, right?
00:37:01.039 --> 00:37:12.239
Um, so sometimes we have, you know, better or worse results depending on what that trigger is, but absolutely that's something I see often.
00:37:13.199 --> 00:37:16.480
What about um stages?
00:37:16.639 --> 00:37:18.880
Are there stages to fibromyalgia?
00:37:19.119 --> 00:37:23.039
You know, I've heard that thrown around a few times.
00:37:23.199 --> 00:37:34.719
I don't think I've ever seen anything like super definitive, like you'd look it up in a in a medical manual and see it listed out like you might see for cancer, right?
00:37:35.039 --> 00:37:48.079
Um, but it does kind of make sense to me that there would be certain stages in terms of there's people like me diagnosed with fibromyalgia and functioning normally.
00:37:48.320 --> 00:37:54.320
There might be people where you're minimally affected and all the way to people who are completely bedridden.
00:37:54.400 --> 00:37:59.199
I've had clients who basically were bedridden because of their fibromalgia.
00:37:59.280 --> 00:38:08.159
So I think it kind of makes sense that there's stages, but there hasn't been anything super clearly defined and accepted as like, you know, this is medical truth.
00:38:08.480 --> 00:38:09.360
Yeah, gotcha.
00:38:09.840 --> 00:38:17.760
So if if someone someone's primary care physician is just not doing a good job, who should they turn to?
00:38:18.000 --> 00:38:19.280
Who should they talk to?
00:38:19.519 --> 00:38:30.880
That's such a hard question because I think honestly, the majority of providers out there are doing absolutely the best that they can with the information that they have, right?
00:38:31.199 --> 00:38:37.920
We our our primary care providers, like their information is an inch deep and a while, mile wide, right?
00:38:38.159 --> 00:38:41.599
Like they have to know a little bit about a lot of things.
00:38:41.679 --> 00:38:48.880
Yeah, so they might not know everything they need to know about fibromyalgia, and that doesn't mean they're a bad doctor.
00:38:49.199 --> 00:38:51.280
That's sort of a different category, right?
00:38:51.440 --> 00:38:59.519
So for me, I'm looking for a provider who treats me like a decent human being should treat another.
00:38:59.920 --> 00:39:02.079
Believe me when I say something, right?
00:39:02.239 --> 00:39:06.960
Like be a partner with me if I bring ideas in, listening to that.
00:39:07.119 --> 00:39:11.599
Um, there's just there's there is a lot of bad doctors out there too.
00:39:11.760 --> 00:39:12.159
Yeah.
00:39:12.400 --> 00:39:16.800
But most people are going to someone who just simply doesn't have the information.
00:39:17.039 --> 00:39:24.079
And so the first thing I would do is as a patient, educate yourself as much as possible, right?
00:39:24.239 --> 00:39:26.960
If your doctor doesn't know, you need to know.
00:39:27.280 --> 00:39:32.480
And that may mean something like hiring a coach to fill that knowledge gap.
00:39:32.639 --> 00:39:38.000
That may mean listening to the fibromyalgia podcast or reading books or, you know, whatever it is.
00:39:38.159 --> 00:39:47.280
And then when you find something that you think might work for you, a great test is to bring it into your provider and say, Hey, I ran across this.
00:39:47.360 --> 00:39:48.719
What do you think about it?
00:39:48.880 --> 00:39:49.280
Yeah.
00:39:49.920 --> 00:39:55.039
The right doctor is going to say, you know what, I don't know anything about that, but let me look into it.
00:39:55.199 --> 00:39:55.519
Yeah.
00:39:55.679 --> 00:39:57.280
That's the doctor I want.
00:39:57.440 --> 00:39:57.679
Yeah.
00:39:57.840 --> 00:39:58.079
Right.
00:39:58.159 --> 00:39:59.920
I don't expect them to know everything.
00:40:00.000 --> 00:40:01.840
They're not going to, right?
00:40:02.320 --> 00:40:13.760
But if they're willing to learn with me, if they're willing to try things with me, if they're willing to listen and be a partner, that'll get you a long, long way.
00:40:14.000 --> 00:40:14.320
Yeah.
00:40:14.480 --> 00:40:14.880
Yeah.
00:40:14.960 --> 00:40:15.519
Yeah.
00:40:15.840 --> 00:40:19.840
So what what what's next for you and your advocacy and your journey?
00:40:20.719 --> 00:40:22.239
Gosh, what is next for me?
00:40:22.400 --> 00:40:24.239
You besides doing this thing with you?
00:40:24.719 --> 00:40:24.960
Yeah.
00:40:25.039 --> 00:40:30.719
Well, and and that should take off and skyrocket everybody with the oh my goodness.
00:40:30.880 --> 00:40:39.920
So um our, as I mentioned at the beginning, our our training programs have been A and C C accredited for continuing education contact hours.
00:40:40.079 --> 00:40:45.360
So the thing I'm working on right now is actually um spreading that, right?
00:40:45.519 --> 00:41:03.360
So making sure that the nurses, physical therapists, all the people that use ANCC have to get ANCC continuing education credits every year, that they know that this is an option and a way that they can learn more to help their fibromyalgia patients.
00:41:03.679 --> 00:41:17.119
Um, I mean, my at the end of the day, the whole reason that I do what I do is to help that individual person out there with fibromalgia who is lost and frustrated and feeling hopeless.
00:41:17.360 --> 00:41:19.440
She's the one I'm doing this for.
00:41:20.000 --> 00:41:28.719
And part of that is also let's see if we can educate some providers too, because I can only help so many people one-on-one.
00:41:29.920 --> 00:41:32.559
I I absolutely love that.
00:41:32.880 --> 00:41:45.599
And um, I I'll I'll say this, you know, in in all the years of of working here, um, I I think the biggest issue in healthcare at times is the messaging.
00:41:45.840 --> 00:41:53.760
And with Pharma getting such a bad rap, um, you would think that they would do things a little bit differently.
00:41:54.000 --> 00:42:17.920
But if the ad agencies and the marketing companies who are running and taking care of their money to reach the people and create these campaigns, that's what I've seen is really actually the biggest, the biggest hurdle is that a lot of these people that work for these companies, especially the ad agencies in marketing, just on a side note, they're not motivated for behind the condition.
00:42:18.000 --> 00:42:19.039
This is a job.
00:42:19.360 --> 00:42:27.360
Uh they may have a hundred other clients that are putting in millions and millions of dollars.
00:42:27.599 --> 00:42:30.559
So what they're doing is regurgitating the same thing.
00:42:30.639 --> 00:42:38.320
They're gonna spend on Amazon, they're gonna spend on Tubi, they're gonna give Oprah some money, they're gonna give a couple of little small charities and groups.
00:42:38.480 --> 00:42:44.320
Of course, they're gonna big give the big charities, the groups who are so-called doing research and so on and so forth.
00:42:44.400 --> 00:42:51.920
And we know that research may take 10, 20 years before we even see something that that actually makes a dent in today.
00:42:52.400 --> 00:43:01.199
And um these these people, I've seen people in pharma companies jump from two to three jobs in in a year and a half and then go off and now they're a school teacher.
00:43:01.440 --> 00:43:12.239
So if if if those are the people who are who don't have a vested interest, who don't have a real passion in this condition, then it's it's hard to reach people.
00:43:12.400 --> 00:43:17.039
I remember talking to companies where they're like, oh yeah, we want to reach you know the black community.
00:43:17.119 --> 00:43:19.440
And they they think of a barbershop tour.
00:43:19.599 --> 00:43:21.519
And I'm like, a barbershop tour.
00:43:21.599 --> 00:43:27.840
That that's the extent because they they they can't think outside of the box of how to do this, right?
00:43:27.920 --> 00:43:29.679
They've not they've not lived it.
00:43:29.920 --> 00:43:39.599
So I I think that uh the a lot of these companies honestly should should look at people like yourself and say, you know, how do we how do we reach more people?
00:43:40.880 --> 00:43:42.239
How do we target people?
00:43:42.559 --> 00:43:44.320
Because we really want to make a dent.
00:43:44.480 --> 00:43:59.599
And instead, and to be honest with you, instead of spending, let's say, with an Edelman and giving them$10 million to manage your$200 million, um, they could give$10.
00:44:02.800 --> 00:44:07.679
And she'd make that work to the ends of the earth.
00:44:08.000 --> 00:44:08.960
Yeah, no kidding.
00:44:09.119 --> 00:44:09.679
No kidding.
00:44:09.840 --> 00:44:13.840
And I think too about like traditional marketing.
00:44:14.000 --> 00:44:18.320
It's things like, you know, the glossy spread in the magazine, right?
00:44:18.559 --> 00:44:22.719
And the the ad on TV or whatever.
00:44:22.960 --> 00:44:23.679
You know what?
00:44:23.840 --> 00:44:28.239
I couldn't tell you the last time I actually saw a drug ad.
00:44:28.480 --> 00:44:28.800
Yeah.
00:44:29.280 --> 00:44:33.039
Because I don't have I don't watch TV that has commercials.
00:44:33.199 --> 00:44:33.440
Yeah.
00:44:33.840 --> 00:44:34.159
Right.
00:44:34.320 --> 00:44:36.400
I don't read magazines.
00:44:36.639 --> 00:44:38.639
I go read an article on a blog.
00:44:38.719 --> 00:44:38.880
Yeah.
00:44:39.039 --> 00:44:39.280
Right.
00:44:39.360 --> 00:44:40.000
But I don't.
00:44:40.239 --> 00:44:44.000
So like how would you reach me?
00:44:44.159 --> 00:44:44.480
Yeah.
00:44:44.719 --> 00:44:48.079
As a fire, as that particular fibromyalgia patient.
00:44:48.239 --> 00:44:48.559
Yeah.
00:44:48.800 --> 00:44:49.920
How would you reach me?
00:44:50.079 --> 00:44:52.880
You wouldn't reach me with the traditional ways at all.
00:44:53.280 --> 00:44:53.840
No, no.
00:44:53.920 --> 00:44:55.039
They they they don't know.
00:44:55.119 --> 00:44:56.400
They don't have a clue.
00:44:56.719 --> 00:45:00.880
And uh, I'm not sure they're concerned about that, to be honest with you.
00:45:01.039 --> 00:45:09.679
I I think that they feel that they have enough doctors out there who will prescribe it to you anyhow that will win that way.
00:45:10.159 --> 00:45:21.840
But instead of really gaining the trust of the people and letting people know that we care, whether it's a device company, a pharma company, biopharma company, and let them realize that no, we care.
00:45:21.920 --> 00:45:26.559
And what we stand for is making sure that we have the best thing for you.
00:45:26.719 --> 00:45:36.480
And we've created something that that really comes from the heart and comes from from trust and and expert data and testing.
00:45:36.800 --> 00:45:40.239
And we we hope that this can change your life.
00:45:40.400 --> 00:46:07.679
And I think that uh if if we if we we've gotten too caught up in titles out here, I've seen that in healthcare, where we're patting each other on the back too much, you know, showing up spending million to a million dollars plus at conventions and these these places where they uh uh erect these big booths and fly everybody in, spending two three hundred thousand dollars on on catering.
00:46:07.840 --> 00:46:08.639
I've seen it.
00:46:08.960 --> 00:46:09.760
Yeah, oh yeah.
00:46:09.920 --> 00:46:17.360
I uh do you know how many how many actual real people I could help right now, today, with that money?
00:46:17.519 --> 00:46:18.400
Yeah, right?
00:46:18.639 --> 00:46:22.880
Like we are uh we're recording this May 26th, right?
00:46:23.039 --> 00:46:25.119
May is fibromyalgia awareness month.
00:46:25.360 --> 00:46:45.760
There is so much stuff that is going on with awareness, but at the end of the day, yeah, awareness is important, it can lead to all kinds of important things, but at the end of the day, survey a fibro person on the street, awareness is not the thing that they dream of, they dream of having their life back, yeah, right?
00:46:46.079 --> 00:46:54.239
And so, yeah, we could spend all this money for all these things, or we could just freaking help somebody.
00:46:54.800 --> 00:46:57.440
That's it, that's it, that's it.
00:46:57.519 --> 00:47:00.639
You know, I mean, what is your legacy gonna be?
00:47:00.800 --> 00:47:02.400
What is your legacy gonna be?
00:47:02.559 --> 00:47:04.239
You know, how will you be remembered?
00:47:04.320 --> 00:47:06.159
Because at this point, this ride is short.
00:47:06.400 --> 00:47:10.480
I I know that I spend my time trying to figure out how I'm gonna help the next person.
00:47:10.639 --> 00:47:14.000
Yeah, and uh I'm not, I'm not, I hate I hate to say it.
00:47:14.079 --> 00:47:16.480
I'm not uh will I leave my kids something?
00:47:16.639 --> 00:47:19.679
Yes, but um who was I listening to the other day?
00:47:19.760 --> 00:47:23.840
And uh they said, man, it did their fortune is not being left to the kids.
00:47:24.000 --> 00:47:25.519
Um forget who it was.
00:47:25.599 --> 00:47:27.280
And and and I feel the same.
00:47:27.360 --> 00:47:29.440
You know, I'm gonna enjoy the ride.
00:47:29.679 --> 00:47:43.760
I'm going to to help as many people as I can and make sure the family is is left with something, but um it it's about it's about leaving that legacy and trying to change something that you can you can change today.
00:47:43.840 --> 00:47:56.000
And I think that um hopefully the right people will listen to this, and uh and it's not gonna come from because trust me, an ad agency or a marketing company is not gonna listen to this and say, wow, they're right.
00:47:57.119 --> 00:47:58.079
We wish, right?
00:47:58.559 --> 00:48:04.239
Let's change the direct the direct the trajectory of how we are trying to do things.
00:48:04.400 --> 00:48:17.519
But hopefully, if the right one or two people in these companies um that have 4,000 vice presidents, 6,000 presidents of this, um, you know, hopefully that right person says, Wow, you know what?
00:48:17.840 --> 00:48:23.440
Um I I wanna I wanna get I want to get in with what they're what what they're doing.
00:48:23.519 --> 00:48:24.320
So that's right.
00:48:24.559 --> 00:48:25.280
Thank you, young lady.
00:48:25.360 --> 00:48:31.840
How people how do people contact you if they want to if they want to get some information or or maybe uh you know get certified?
00:48:32.159 --> 00:48:33.039
Absolutely.
00:48:33.360 --> 00:48:41.360
So the um the fiber malgia podcast is just at fiber malgapodcast.com or anywhere that you listen to podcasts, look that up.
00:48:41.679 --> 00:48:48.880
And then you'll find our training programs at fiber my coaching institute.com.
00:48:49.519 --> 00:48:51.760
I love that long, long, but there you go.
00:48:52.159 --> 00:48:56.320
And and we are also working on a television show.
00:48:56.480 --> 00:48:59.440
It's almost like the doctors slash meeting Dr.
00:48:59.599 --> 00:49:01.440
Oz, because I'm like, you know what?
00:49:01.679 --> 00:49:18.239
We need to have people like you on who are just real people who uh we can flush out these conversations, we can go in depth in these conversations, hopefully, so people don't have to go to Facebook or Twitter to get somebody pushing Ivermectin on them.
00:49:18.320 --> 00:49:22.559
Because I think I've at this point, I think ivermectin can cure everything the way they push it.
00:49:22.880 --> 00:49:24.880
I mean, that's the way I understand it.
00:49:26.159 --> 00:49:36.400
I mean, you know, so it's like, you know, hopefully, um, you know, we we we can create something where we can really take a deep dive.
00:49:36.559 --> 00:49:41.679
I I think the focus is really gonna be on women's uh health too as well.
00:49:41.840 --> 00:49:44.079
Uh I'm I'm passionate about this.
00:49:44.559 --> 00:49:55.280
And um it's we're gonna line up some amazing experts here and and shoot something that I feel is gonna be a game changer and then put it on some some great platforms.
00:49:55.440 --> 00:50:05.920
And um, and I think using that to kind of take back the power, yes, we need something to to shake up the system.
00:50:06.239 --> 00:50:10.559
Too many people are just happy sitting on jobs out here collecting a paycheck.
00:50:10.800 --> 00:50:20.159
Yes, you know, that's that's you know and the other half of it is that as patients, we need to take our back our powers, patience too, right?
00:50:20.480 --> 00:50:23.760
Because going into a doctor's office, that doctor is not God.
00:50:23.840 --> 00:50:26.239
But yet we sort of treat them that way, right?
00:50:26.400 --> 00:50:31.440
Like whatever you say, absolutely, you know, sometimes we need to push back.
00:50:31.599 --> 00:50:34.719
Sometimes we need to say, you know what, I'm not being treated like this.
00:50:34.960 --> 00:50:35.599
Bye-bye.
00:50:35.760 --> 00:50:45.199
You know, um, I think that that we have elevated providers, doctors, a little bit too much, right?
00:50:45.280 --> 00:50:46.320
They they know a lot.
00:50:46.400 --> 00:50:51.440
I'm not, you know, dissing them and they they did their work, got their degree, and all those other things.
00:50:51.679 --> 00:50:55.360
But I think as patients, we are giving away too much of our power.
00:50:55.679 --> 00:50:58.480
Yeah, yeah, well said, well said.
00:50:58.719 --> 00:51:00.320
Well, thank you, young lady.
00:51:00.559 --> 00:51:26.719
And um we're we're gonna continue this, and hopefully, real soon, we will see each other in Costa Rica, and we will make something that will shake up the the industry of fibromyalgia and give some women some some options, some hope, um, educate some people, get some people certified to to get out here and help these these women who are looking for help.
00:51:26.880 --> 00:51:45.760
And uh you keep doing what you're doing and and and and and keep sending them my way, um, big or small, we'll we'll take it because at times I think it's the small ones who actually uh get behind these type of projects who still have that passion and and mean it from the soul, you know.
00:51:46.000 --> 00:51:47.119
So yeah, yeah.
00:51:47.440 --> 00:51:51.280
So I'll talk to you soon and thanks so much for making the time.
00:51:55.920 --> 00:51:57.840
Oh man, that was awesome.
00:51:58.000 --> 00:52:10.320
So this is, you know, when I when I hear those kind of conversations and um I just moved by the support, I I I really think there's no one that we haven't sent this to, our our work.
00:52:10.559 --> 00:52:25.599
And um so like I said earlier, it was it was more of a times sharing it and then wondering why somebody doesn't see how this is a benefit for them and for the people that they're trying to fight for.
00:52:25.920 --> 00:52:30.000
But I guess this is a business and we have to just keep keep riding the storm.
00:52:30.079 --> 00:52:31.760
And and I'm gonna be vocal about it.
00:52:31.840 --> 00:52:36.320
You know, I mean, if you look at and if you look at politics, right?
00:52:36.639 --> 00:52:51.840
We've got the Candace Owens, we've got the Tucker Carlson's, we've got the the Nick Fuentes, and these these people are making millions of dollars, millions of dollars, speaking out, pushing the agenda, you know, exposing things.
00:52:51.920 --> 00:52:54.320
And I and I'm not even here to do all of that.
00:52:54.800 --> 00:53:09.119
But we have to have a vocal advocate who isn't scared to push this, who isn't bought out by having a job at one of the companies, or who isn't looking for some benefit somewhere down the line.
00:53:09.840 --> 00:53:26.800
We'll find what we need to find for our programs, and we'll make that the way it needs to be made, whether it's with smaller companies or bigger companies or whoever it might be, because there's always gonna be a company that sees the value of what we're doing, who wants to work with us.
00:53:27.280 --> 00:53:34.079
Because maybe they just started and they have a heart still and they created something because they want to see change.
00:53:34.559 --> 00:53:36.239
And I think that's what matters.
00:53:36.480 --> 00:53:39.679
So I'm gonna continue to be vocal in this space.
00:53:40.000 --> 00:53:43.679
And I see the ones who are quiet, who see my stuff.
00:53:43.760 --> 00:53:52.400
I have people who reach out to me and say, Charles, I've been following you for years, and I just wanted to say, you know, congratulations on your work.
00:53:52.639 --> 00:54:01.360
So people watching, they may not say anything because once again, they're in the system and they don't want to lose that$150,000 a year job.
00:54:01.599 --> 00:54:05.360
You know, they don't want to stir things up, but I can, and I will.
00:54:06.159 --> 00:54:07.840
And we will continue to win.
00:54:07.920 --> 00:54:18.239
And these companies are gonna have to work with us sooner or later because we we're creating something that is generational and for the next wave that needs to happen.
00:54:18.400 --> 00:54:21.119
So keep tuning in to start within.
00:54:22.079 --> 00:54:24.000
We are rocking.
00:54:24.400 --> 00:54:26.480
Um, we're turning these things out.
00:54:26.639 --> 00:54:28.079
But like I said, I'm excited.
00:54:28.159 --> 00:54:31.119
Hopefully, in two weeks, we're gonna start the television show.
00:54:31.199 --> 00:54:32.639
We're gonna shoot the pilot.
00:54:32.800 --> 00:54:34.719
Um, that's gonna be bananas.
00:54:34.880 --> 00:54:37.039
That is gonna, man, it's gonna look amazing.
00:54:37.199 --> 00:54:42.800
If you know my quality and you know what we do, the television show is gonna be even on a bigger level.
00:54:43.039 --> 00:54:44.320
And that's what we need.
00:54:44.480 --> 00:54:52.559
We need something else out here that answers questions instead of people going to every little fake guru underneath the sun.
00:54:52.880 --> 00:54:54.960
And there's a ton, we'll talk about that too as well.
00:54:55.119 --> 00:55:02.719
There's a ton of fake gurus out here who who literally are making killing off of sick people, right?
00:55:02.960 --> 00:55:04.159
What was I watching the other day?
00:55:04.239 --> 00:55:19.360
I saw something, and uh and and and and it's interesting because as soon as someone, I think it was David Sinclair, I don't like the guy, but as soon as someone says something, and I think he said something, and here I'm Googling it now, trying to figure out it.
00:55:19.440 --> 00:55:22.159
You know, he said, Oh, yeah, this probably I forget what it was called.
00:55:22.320 --> 00:55:29.039
And I'm Googling it now, and I'm going on Amazon ready to press the button, and I'm like, why am I doing this?
00:55:29.280 --> 00:55:30.800
This man is trying to push something.
00:55:30.880 --> 00:55:31.599
You know what I'm saying?
00:55:31.679 --> 00:55:34.960
He's getting something out of this, he's not pushing this thing just because.
00:55:35.039 --> 00:55:46.239
And then I looked at some of the side effects, and it was, or or just some of the the benefits, and a lot of it was this is not conclusive to give this type of effect or this type of benefit.
00:55:46.400 --> 00:55:52.960
And here I am chasing the snake oilsman, you know, um uh salesman, you know, uh, snake oil salesman.
00:55:53.199 --> 00:55:55.360
So be careful with that too, as well.
00:55:55.440 --> 00:55:57.280
You know, go get the right information.
00:55:57.519 --> 00:56:01.119
It's not every pill, potion, and lotion that we need to run behind.
00:56:01.280 --> 00:56:09.679
And uh and and share, share, share, and like because uh we're we're we're starting a revolution right here, you know?
00:56:09.920 --> 00:56:12.320
And it takes a revolution to make a solution.
00:56:12.559 --> 00:56:13.440
Yes, man.