Amanda Love | When Doctors Say, "We Don't Know" | Episode 206

Welcome to the show. My name is Eva Vennari, founder of the Elevate Institute, and I will be your host for today's podcast. When Doctors Say We Don't Know is an inclusive conversation. So many are craving to share their stories and experiences, and today's guest is no exception. Today's honored guest is Amanda Elise Love. Don't you love that name? All right. Amanda is a registered holistic nutritionist who works with those with fibromyalgia. She wants you to know the meaning of the word holistic with talking about nutrition and supplements. Let's get into it. Amanda, welcome to the show.

Thank you so much for having me.

Absolutely. And fibromyalgia is one of those mystery illnesses and people hear the word thrown about.

Yeah.

So tell us what it is.

Let's go.

Let's start there. What is it?

So they're still sort of doing research and figuring it out, but The main thing with fibromyalgia is that it's extreme fatigue. It's— the fatigue is so bad that you can't get off the couch. You can't do daily activities. You can't shower. So people need to realize it's not just the fatigue that you get like once in a while or when you've had a long week or something. This fatigue is continuous. It doesn't go away. And you're in extreme pain down your body. So your neck, your shoulders, your legs, your arms, and it's excruciating. And most of the time people are not sleeping or they can't fall asleep. Or so they're not getting that deep restful REM sleep that everybody hears about. So when they wake up, they feel like a truck has hit them. And then they also deal with other issues with the fibromyalgia. But those are always the top 3 things I always hear from people is fatigue, pain, and sleep are the 3 main symptoms.

So what is the difference between chronic fatigue, like being, being tired all the time and having this very similar set? Yeah. And this.

Yeah. So Chronic fatigue. And so there's also chronic fatigue syndrome, and they're very, very similar. With fibromyalgia, it's more— the pain is more prevalent. And then with chronic fatigue syndrome, it's more the fatigue is the main issue. But they're very, very similar. And I do talk about this in one of my podcast episodes so people could actually listen to that and learn a little bit more about that.

Yeah, because oftentimes they're thrown in the mix together. You'll hear chronic fatigue and fibromyalgia. Yeah.

So a lot of times people will say, oh, I have one or the other. So if you have those symptoms, then even if you're not diagnosed with the fibromyalgia, you have chronic fatigue syndrome, I could probably help you with those because they're so very similar.

Well, then they are similar. But, and when it comes to the fibromyalgia, yeah, at least when I had it, it was a traveling pain. It didn't stay in one place. Is that common for most people?

Not really. For most people, it's usually It's very constant, and usually it's the whole body. I always tell people, um, it's not just one little— I told someone in our podcast interview, it's not just a pain that you get randomly, like, say, in your knee or your arm. It's not just a little pain. It's, it's down your whole body. And there's actually They actually do like this tender point test, and the older doctors probably still know about it and they would still do it today, where they touch all these different points down your neck, your body, and they'll say, oh, is this painful? Does this hurt? And usually— If you're wincing and stuff, they'll say, well, You probably have it. And if you have 13 of the 18, but that's sort of not the greatest test to do. Or they'll either say, well, if you've had fatigue, pain for 3 months or more and it hasn't gone away, then you probably have the fibromyalgia. Or if they can't figure out what health condition you have, They might diagnose you with fibromyalgia. So we have all these different ways to diagnose you with fibromyalgia.

Because there's no blood test for it, right?

Well, actually—

Oh, yes?

There is. I'm still doing— I have to look into this a little more, but there is this test and people can look it up. It's called the FMA blood test for fibromyalgia. And they supposedly say it's across the country. So maybe that would be a better way to diagnose people with fibromyalgia. But I'm wondering how many doctors actually know about it.

Well, that's what I was wondering too. I was really curious as you were mentioning this. It's like, what kind of doctor would even know to—

Yeah. Like I mentioned, So my— I mentioned I had fibromyalgia to my primary doctor. And he's like— and this was recently— and he's like, oh, he was older. And he was like doing the tender point test. And I'm thinking, well, this isn't— he didn't say anything after he did it. But I was thinking, well, this isn't— I've gotten better from it. So I don't probably have like the pain as much. Mm-hmm. 10 years ago when I was diagnosed with it. So I mean, I think a lot of times we get diagnosed with the fibromyalgia, but then it's like we're stuck. And the people who usually diagnose you, it either could be a primary doctor, but most of the time it's like a rheumatology place. And I actually went to the one of the top rheumatology places in the country because I used to live like 10 minutes away from there. And I find out recently, I actually called them up just to see if they were still taking people with fibromyalgia. And they don't take people with fibromyalgia anymore. Oh, it's interesting.

Where do they go then?

I haven't— I didn't— I don't know that. And I'm like, well, that's interesting.

Yeah.

Well, how many people aren't getting diagnosed with fibromyalgia if they're not going to a rheumatology place?

Right. Well, and that's also— so people are maybe confusing it initially with something else like arthritis.

Yeah. And a lot of times I think people— a lot of times people will tell me, well, my primary doctor doesn't say it's not a rheumatology issue. They'll say, well, some people are saying it's a neurological issue. And I'm like, well, then why aren't the neurologists diagnosing you? So it's a lot of up in the air with fibromyalgia. But if you're dealing with the fatigue, pain, and sleep issues, you're not— I always tell people you're not alone. And we have to get to the point where we're like, okay, I've been diagnosed with this. Or I have these symptoms because we all know our bodies.

Right.

And our bodies, I think a lot of times people give up with finding the answers because the doctors will say, well, your blood test was normal. All this was all normal. We did all these different tests. Yeah. I mean, I was 20 years old when I was diagnosed. And so you would look at me. I was— I've never been overweight. I look normal. I look perfectly healthy. But then why am I dealing with this excruciating pain and fatigue? And they said to me, the only thing they recommended was, which everybody knows about because everybody has seen the commercials if you're in the US, Is the Cymbalta or the Lyrica.

Right, yes.

And then you're like, okay. And then they— and then the sad thing is they don't tell you about the side effects.

Which are?

Like the nausea and the all the other issues that goes along with being on medications and stuff. And it doesn't help, and it's supposed to help with like the fatigue and the pain. But I've talked to hundreds of people who are like, well, I'm on this medication and it's not doing anything. And then I'm like, well, how long have you been on the medication? And people don't— it's very interesting. People will be so trustworthy that they'll take them all these medications, but then they don't know when they've started them. A lot of times they don't know if it's helping them, but they'll still continue to take them.

Even though it's not giving them the result?

Yeah, and then a lot of times I think I talked to— I mean, I talked to somebody, he's like, well, I'm 40 years old and I'm on 40 different medications. And I'm like, okay. And I'm like, and they list off a lot of times people with fibromyalgia They have so many. They'll have maybe other health issues too. And I always say to people, well, just because you have all these different health issues, we can at least start with one, and then they could actually help the other health issues too.

You got to start somewhere.

You have to start somewhere. Or do you want to live your life— I always tell people, you don't want to live your life where You're not living a life.

Yes. Well, and that leads me down to this, this question. It's like, if this is not something that can be really truly diagnosed with a, an actual test, like you would if you had a virus, right? That's different.

Yeah.

So then if you find yourself without the symptoms, you're gaining the energy, you don't have the ongoing chronic pain, your sleep gets better, can you say that you're recovered?

Um, so I always— I don't— I, I can't— so I'm a nutritionist, so I can't say people are healed or cured or anything. I always just say, well, if you're feeling better, that's great, and we could work on if you're not feeling better. But for me, it's getting people to the point where they're like Okay, I could do the daily activities again. You don't want to be the person who's stuck on the couch who can't have a life.

Mm-hmm.

Because a lot of times people with fibromyalgia, they're very, very, very depressed. And you get to— you're at that point, you probably aren't taking showers very often because you're in— showers were very, very painful. When I was first diagnosed with it and stuff, and I didn't know. And with— you can't do like common activities. So I was talking to 2 women, and they both mentioned they would love to get back to just cooking meals for their family.

Basic. This is basic living.

It's, it's really just getting back to basic living. I mean, If you could get back to whatever, 30, 50, 60, 70%, I mean, who wouldn't want to do that?

Oh my goodness.

Well, that's got to be very, I mean, it's not just limiting.

Do people, at what point do they realize, and at what point did you realize where, okay, what I'm doing every day to overcome the sleep problems, the pain problems is digging into my ability to enjoy life, to be active in life. And then you draw the line and say, okay, this has to stop. At what point did you have to get to?

Um, so I was— so I, when I finished high school, I, I went straight into a personal training program. And so I did that program. It was like 6 months, 500 hours. And then it ended in December of 2009. And I got— I all of a sudden, I was so exhausted and fatigued and pain. And I was like, what the heck is going on? And I had been dealing with a lot of immune issues. I was very, very sick as a child where I would be sick every 4 to 6 weeks. I was actually born 6 weeks early. So I started— I was like, okay. So I didn't get diagnosed with the fibromyalgia Oh, the fall of 2010. And when I got diagnosed with that rheumatologist, he started me on the medications. I did the physical therapy. I did the pain management. I— and you go sort of down like a rabbit hole of trying different things. And you asked, and I was asking the rheumatologist if I should do these things. And I don't know if people— a lot of people, I don't know if they've done this or not. So with the trick with the pain management, they would mark down your back and they would shoot up— they had a huge needle and they would shoot. Oh my gosh. Into your back. So all of those different trigger points, they would. And so what happened is your blood sugar would drop and you would have to have cookies and juice. It was—

Oh my God. Yeah, it sounds a little barbaric.

And then it was very— yeah. And then this was right next to the physical therapy place. So that's how we found out about it. We were like, my grandma was like, oh, should she do it? And the rheumatology People, of course, they're like, oh yeah, sure, you could do that. And so, and of course you're awake as you're getting this treatment. And so they recommended 3 treatments. I only did 2 because I would come out, I was crying, crying, crying.

Mm-hmm.

And I was like, this is, this is ridiculous. And The rheumatology people, of course, they weren't very helpful. I think one time they said to my grandma, when I had gone out of the room, they're like, well, she's very depressed. Well, okay, how's that helpful really?

Right.

I mean, I mean, I'm one of those— they didn't even know me and they were gonna say I was depressed, maybe. And Maybe I was a little bit because I couldn't do anything at 20 years old. But I mean, you have to get to a point where you're willing to do everything possible. And I think you have to make sure your health's a priority, because I think a lot of times people don't make their health a priority. And they say, well, I'm very busy.

Mm-hmm.

And I think a lot of times you have to find the time to work on your health. Well, because, because it affects every part of your life.

Well, absolutely. And I'm wondering if the I don't have time really means, look, I don't have time for the things that I am not sure are going to work. So unless you have an absolute definite solution for me, I'm not going to make the time.

Yeah. I mean, a lot of times I tell people I don't Besides, if like, if you're working with me, besides the phone calls, which takes some time, my recommendations are gonna like— they'll only take a few minutes out of your day in the very beginning because we're gonna start very, very, very, very slow. I don't tell people you have— I'm gonna give you 20 recommendations and you have to do all this. I might not even start with the food right away because people can't even cook it in the very beginning. So I might start with some little supplement or anything. But, um, eventually I did find a wellness chiropractor and he said to my grandma, well, if she's been very sick. And she's been diagnosed with fibromyalgia at the age of 20 years old. She's been very, very sick for a very long time. And a light bulb went off in my grandma's head, and it was a free talk that he had done, and he was only about 10 minutes away. And now he's— Recently I've seen he's very well known He's been on like CBS and all this for like fibromyalgia, all these like top networks and stuff. But it's very interesting. He was the one who tested me for the food sensitivities. And it's, and it's actually a lab that people can actually pay and stuff if they want to, but it's Intralabs. It's not like the testing that you get where you're— it's like done on your back. It's like prick testing.

That's for allergies, right? That's the one where they—

Allergies and all that. It's more of like blood. He did like a blood, he did stool, he did saliva, he did all the— and, um, he also did food sensitivity testing, which For whatever reason nobody had ever done before. And so, um, I found out I had 2 genes, one gene from each parent, that predisposed me to the gluten sensitivity. I also have a soy, eggs, and dairy, and it was the highest he ever had in his practice at the time.

Setting standards.

Well, that seems to be my life. I always do something different. So, um, so that started the whole plan of doing an elimination diet, which I, I mean, people might know about that or not, but that's sort of what— that's what I focus on. doing with my clients eventually, because I want them to at least try it. I think a lot of times it, it's probably because it's such a big thing right now. But everybody says, well, I've gone gluten-free. And I'm like, have you really?

It's become a bit of a trend. Well, have you— I mean, what is your— what are your thoughts about what the manufacturers are doing to make things quote unquote gluten-free? Because I look at the ingredients and I go, I could do better on my own.

I know. I, I mean, it's like, but so much stuff is gluten-free, but then it's like so processed and it has so much stuff in it. I'm like, you, you could just stick to the basics. But I think a lot of times people think, well, I've gone gluten-free, and I'm like, okay, well, how long did you do it? And they don't really know. And then I'm like, well, did you cheat?

Yeah, it's a decision. It's like you're doing it or you're not, especially if you have Candida problems in your gut.

Yeah, yeah, especially if you have Candida and stuff. And I'm always like, well, one little molecule of gluten can stay in your body for weeks to months, so you can't cheat. And I think a lot of times I think people think they just have to do gluten-free And that's going to fix everything and that's going to be the answer. And I always say to people, well, you might have to do more than gluten-free.

Yeah.

I mean, we have— if you look at, there's a lot of different products where it's free of the top 9 allergens. So I don't think people go far enough when they do things. They just think, oh, one little thing is going to help them. And I always say, no, it's not just one little thing.

Yeah. Especially if you're not getting results from doing that one little thing, it's going to take something more.

Yeah. And a lot of times I think people think, oh, food is the thing that's going to fix it, or this supplement. And I'm like, no, our bodies are super complex. I think I think people just think, and a lot of times I think people think, oh, I'm going to try the newest, yes, or fad diet. Yeah, like, well, that might not be the right fit for your body.

Yeah. So when they're, when they're working with you, I mean, what, where do you, where do you start? You're starting with some sort of, um, do you test? Is your, is your intake all verbal? How do you work?

Um, so it's all verbals. I actually So I start— well, I do have a free, like, 45-minute phone call.

Oh, yeah.

Yeah, just to see where they are and stuff and where they want to get started and everything. And so I can learn more about them. I always tell people, if I don't know it, I want to know what your main health concerns are. And if I think, oh, you might be better with someone else, then I will definitely refer you. I, I always think people with fibromyalgia, I think they just go from person to person. And a lot of times I think not— we all— we don't know everything about health. So if you're good, you have to be— if they have to go to someone specific, and if they want to focus on some other issues that I'm not really an expert at, or I don't really focus on like weight loss or something else, if that makes sense.

Mm-hmm.

I do have like, depending on what they want to do, I have group programs. I have one-on-one services. So with the one-on-one services, I start with a 90-minute health history because I want to get to know Every single thing about that person.

There's, there's always, there's always the story.

Yeah, there's always the story of why they're dealing with that health concern. And I always want them— I, when they sign up on my website, they'll get the health forms. And it's very helpful if they fill them out beforehand because it's, it's like 10 to 12 pages long. It's a pretty long health history. And it, and it's some of the questions are common that you get asked, but then it goes deeper into— it tells you about, it goes, shows me, oh, their immune system's not working quite right, or they have these health issues that might be connected to their digestive system. So I always find out I look at those beforehand before the phone call, and I always find out when you get on the phone call, people always leave things out.

They do. They do. What do you— what's the most common? Yeah.

It's like with the— like this example would be like, okay, how many meals or snacks a day? And they might not say anything about snacks, and then you find out They're actually having a couple snacks today, or they'll leave something out, or they'll be very brief about what they're eating. And I'm like, okay, you have to be eating more than whatever you're eating. So it's very interesting. I think people sometimes are worried that you're gonna judge them. Yes.

Yeah.

And I always tell people, I, I'm not here to judge you. I I— my thing is to support you, give you the answers. I think a lot of times when we go to wherever we go, to the doctor or the rheumatologist or wherever we go, a lot of times you get recommendations and then the doctor might never follow up with you or never ask you about that recommendation, if you're taking that supplement or how's it going. And so my job is to be there if you need to ask me questions. I'll— I'm happy to answer them. And then there's always follow-up phone calls after that that are like 50 minutes that you could do every couple weeks. But I always say to people, we should at least do 3 sessions after that 90-minute health history because we want time for your body to heal. I always tell people, you didn't wake up with the illness, so you're not— the illness isn't going to go away in a day or two or a week or a couple weeks. It takes a lot of time.

Yeah.

And I think, I think you're always working on yourself, so you might, you might be totally better with the fibromyalgia and Then you might want to work on some other health issue. So it's— oh, you're always working on your health, but the main thing is you have to make your health a priority.

Yeah, I find, I find that most individuals who end up with these invisible illnesses, you know, things that don't show up on an x-ray, that's, that's usually the precursor, is that the priority is other people first before me. And if that could be You know, helped at all. That's part of— that's part of the habit changing, right?

So it's all— It's all mindset, I think. I think, yeah, you have to get to a point, because when I got— when I got to that wellness chiropractor, he's like, oh, you are gonna have to get rid of the gluten and the soy and the eggs and the dairy. And he said, you're gonna have meat and vegetables. And I don't I don't remember if he said I could have grains. I don't remember that. I think I was— but I was super very clean and everything. And, um, I was at that point where I was willing to try anything, and I had never heard about sensitivities and anything like that. And this was 10 years ago, and it's not as big as it is now. I mean, there's— I mean, I feel like in the last 3, 5 years it's gotten really big and you see it everywhere when you go to the stores and stuff. But I think—

It makes you wonder.

Yeah, yeah, it makes you wonder, well, is this just a thing, a fad, or what are all these people getting sick with it, or what's going on? But I think, I think you get to the point, you have to get to the point where you're like, I'm gonna do anything And I don't care what family or friends say, because I think a lot of times people probably are worried what family and friends say.

They are.

And you're— you have to be at that point where you're sick and tired of being sick and tired, because if you're not, then you're not going to take action. I always tell people, I could give you all the recommendations, I could tell you But if you're not taking action, then you're not going to get better.

Yeah.

And I can't force you, but I can hold your hand along the process and tell you, oh, I've been there, I've done that, I understand. Because I think a lot of times people don't have that family support, or they don't have those friends, they don't have those people Because a lot of times with fibromyalgia, it's not— you can't see it. So people think, oh, why can't you do—

Snap out of it.

Yeah, yeah. Why can't you snap out of it? Why can't you— like, why aren't you— like, why can't you do cooking? Or why can't you— or they just, they haven't heard really any information about it. That's why we're here. Yeah, that's why we're here. I mean, that's why I did my— that's one of the reasons I have my podcast is because I want people to know.

Well, let's share that. Yes, tell us about the podcast. We want to hear it.

So I tell people, so I created this podcast because I was looking and I, back in Last year, early last year, I was like, oh, because I was wanting to get on people's podcasts and I didn't see any. But I saw there was a few like interviews with podcasts with fibromyalgia, but they were years ago and stuff. And there wasn't really that many podcasts, just one specifically on fibromyalgia. There is me and someone else now, but So I was like, okay, I'm gonna launch this podcast. And within like a month, I was like, had the podcast out, and it's been out since last year, so May. And so I talked about a variety of different topics, really, and I always related back to fibromyalgia. But the main— the 2 episodes I always tell people they should start with are my story, because I do— and that's episode 2. And then I also just recently did another episode, which is episode 31, which I talk— it's an updated version of my story, talking about diagnosed with fibromyalgia 10 years ago. Because this month would be 10 years.

Wow.

Yeah. So I always tell people those are the 2 I would start with. And then I would always recommend the sleep episode, which is episode 5. And then if they wanted to know what, what I do as a registered holistic nutritionist, I always talk about that. But the main thing is for people to take action, because I always tell people these episodes are short. They're under— most of them are under 10 minutes, so they're very short. I always give a couple like action tips at the end, and there is— There'll be 32 episodes tomorrow. And just holidays, just talking about different subject matters around the holidays, because I think people with fibromyalgia, I think it's a big thing that they need help around the holidays. What should they do and stuff?

So that could be a whole nother episode for when doctors say— but so I didn't hear the name. The name of your podcast is— I know it is Fibromyalgia Real Solutions with Amanda Love, right? Is that the one?

Yes, it's Yeah. And it's been going. And I've been— I've got it. So right now I'm very consistent with it. So I release one new episode every Sunday.

Oh, beautiful. That's when, that's when this runs is every Sunday. So we're in good company here. So I want to say thank you for that. Do you have any, any, anything that can, as listeners are saying, I want to connect with Amanda? Yeah. What would you like to share with them?

Yeah, so I love connecting with people. They can always find me on Facebook or Instagram, and it's just my full name. It's Amanda Elise Love. So that's very simple. And they could send me a message that way. And/or they could go on to my website, which is also Amanda Elise Love.

So make it so easy. Yeah.

I figured I might as well make everything all the same so people could find me really easy and stuff. And I always tell people, number one thing you could do is if you're not ready to work with me and do start with that free phone call, the first step would be to sign up for my free Sleep guide. It's The Sleep Fix for Those with Fibromyalgia, and it's right on my home page, and you just put in your name and email. And that way you start with my free sleep guide where it tells you about how to get that REM sleep so you don't feel like you've been hit by a truck. And I always send emails every week, not too many because I don't like to spam people, but you'll always get an email every week where it will share the new podcast episode. And then I send one Tuesdays and Fridays so you can keep updated about any fibromyalgia news and what I'm doing and everything.

Perfect. Well, that's wonderful. That's a lot of information. Thank you for your generosity. So I always want to wrap up the episode, and I think I know what the answer is, but I'm going to ask anyway. What do you feel is the most important thing to remember when searching for answers?

Um, look for people who are actually qualified to teach, that actually teach about fibromyalgia. And then the best thing is, I always say to people, it's nice to have somebody that Could relate to you because I've been there. And so if I've been there where I couldn't get off the couch, I couldn't move, I couldn't do anything for a couple years, to now being able to run my business and everything and be able to enjoy daily activities, then you can too. So the biggest thing is you always have to Take action and not give up.

Love it. That's perfect. And I, I think that will bring some hope to some people. So thank you so much for being on this episode with us, Amanda.

Thank you so much for having me.

Absolutely. And thank you to all of you who are listening in with Amanda Elise Love today on When Doctors Say We Don't Know. This has been an engaging conversation, and I'm hopeful that those of you listening will hear that message of hope too. So you can turn your experience of pain into triumph. If you are driving or just simply can't click on the links right now, don't worry about it. I'll have it all in the show notes for you. You can always go to theelevateinstitute.com and follow the podcast links for today's show. And there's more to talk about next week. Tune in to the next episode of When Doctors Say We Don't Know. This is Eva Vennari reminding you to question everything.