Living with Fibromyalgia with Amanda Elise Love
me&my health up podcast episode #73 – Transcript
Anthony Hartcher 0:00
Welcome to another insightful episode of me&my health up. The purpose of this podcast is to enhance and enlighten your well-being and I’m your host Anthony Hartcher. I’m a clinical nutritionist and Lifestyle Medicine Specialist.
Today I’ll be discussing Fibromyalgia with Amanda Love. Amanda Elsie Love is a registered holistic nutritionist specializing in Fibromyalgia. She has suffered from this debilitating illness for many years and is now her passion to help others find whole wholeness and healing in their own lives.
She is a writer, podcaster, registered holistic nutritionist, speaker and currently resides in Prescott, Arizona with her to Westies. You can tune in and listen to her extensive library of podcast material called fibromyalgia, real solutions with Amanda love on all platforms, or find out more about her personal coaching available on her website, which will be in the show notes. So how are you today? Amanda?
Amanda Elise Love 1:05
I’m good. Thanks for having me, Anthony.
Anthony Hartcher 1:08
You’re welcome. I’m really keen to hear your story and more about what fibromyalgia is. So please share.
Amanda Elise Love 1:17
Yeah, my story. Um, so I am now 31 years old, but back in 2010. I was. I was I turned 20 years old in January of that year and two weeks before that, I played a personal training program and it was 500 hours, six months course and all this suddenly, I couldn’t get off the couch. I was in so much pain. I was so fatigued, I would go to the gym. I was crashing. I was taking two-hour naps and I didn’t know what was going on and stuff.
So then I was like, Okay, this went on for about 10 months and then they said at the top one of the top rheumatology places in Mesa, Arizona, they said, Well, you have fibromyalgia and I’m like, Okay, I didn’t. I didn’t know what that meant.
Here’s a pamphlet, a brochure that says, What is fibromyalgia? And then it said, Then they said to me? Well, they said to my grandmother, well, she’s probably depressed. Well, yeah, you’re depressed at 20 years old if you can’t do anything and then they’re like, well, you could go on to the medications.
I did a medication called Cymbalta. It’s really pushed in the US and also there’s another medication in the US that’s also pushed called Lyrica and you see, always see the commercials for it nowadays, but I did it for a few days, I felt horrible. I was nauseous. I was like this. I’m not staying on this for the next, whatever 60 years, 70 years and I was like, Okay, what’s the next step?
The next step was physical therapy and I did the weights, I did swimming. I did it for like about four to six weeks, it was so funny. I always think it’s funny that like, 10 months before, 11 months before I played that personal train program. So I always say to people, fibromyalgia is not a condition where you’re overweight, you look complete, you can look completely normal and I think that’s the problem with fibromyalgia is, a lot of times people look completely normal and people are like, Well, why can’t you do what you used to do?
Eventually, like right next to the physical therapy, because this is what people do with fibromyalgia. We’ve just tried, tried, tried. Right, thanks. So next thing, physical therapy was pain management. That was the most excruciating thing I’ve ever done in my life. Um, so what they do is you would have three treatments, of, and what they would do is draw little circles down your back, your neck, your shoulders and what they do is we were in like hospital care and what they would do was they would shoot this huge needle right into all those trigger points as you were awake.
Your blood sugar would crash. You’re, you’re super lightheaded, and then they would say, oh, have some juice, have some cookies. It’s good to raise it back up but it was the most painful thing I’ve ever done and I would come out my grandma would drive us home.
I was bawling, crying. I was in so much pain and I only did two of the three treatments, because I am the type. If something doesn’t work, I’m not going to continue to keep doing it. That’s just my personality and eventually, in 2011, I turned 21 years old and in the spring of that year, my grandmother found a little newspaper clipping said wellness talk by a wellness chiropractor, 10 minutes from our house and it said, come, it’s a free talk, she went to the talk, I curse couldn’t go because I was in so much pain.
He said to her, your granddaughter has Fibromyalgia at 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 she thought, oh, he really gets it. She had been a nurse and I worked with him for eight months and he was the one who tested me for food sensitivities. found out I had two genes that predispose me to gluten that’s insensitivity highest in his practice at the time. But I wasn’t celiac. I had soy sensitivity, Egg sensitivity, dairy sensitivity and I will be 10 years in July, this year that I’ve been off of those and then he also did some other things like Stolze live testing, all that but I mean, that really was the biggest thing for my health was turning that around was getting off with those things.
Anthony Hartcher 6:39
And so it was really discovering the food sensitivities that really helped you in terms of the management and how do you feel today, you know, given a decade on from where you were. So what’s life like for you today?
Amanda Elise Love 6:53
Um, yeah, it’s totally different. I’m not a, I’m like, I’m not stuck on the couch, I could have a life I could still do. I could do anything I want to do, I could run errands. I think the biggest thing I tell people that people with fibromyalgia don’t know, is that you can’t even do the basic, basic, basic things that normal people, but that don’t have fibromyalgia don’t take for granted.
I always say taking a shower was draining. It was completely draining. It was exhausting. I didn’t, I was in pajamas all the time because I didn’t want to take them, I didn’t want to get dressed because I was so exhausted.
The shower water hitting you was painful. I always tell people, if you don’t take it for granted, just hugging someone was painful. I remember, my shoulders were the most like tender part of my body. I was so in pain that I didn’t give hugs. So when I actually was able to get hugs again, I was doing it all the time, because you don’t realize what you miss until you don’t have it and I think that’s what people need to realize, like don’t take doing these small things like working out, spending time with your family and friends for granted.
Anthony Hartcher 8:27
And in terms of what else like have you done that you found it helps you manage the condition outside of eliminating those foods that you found that you’re either intolerant or had a reaction to.
Amanda Elise Love 8:39
Um, I feel like working on my stress, I think is a big thing. I think a lot of times with fibromyalgia, we doubt we get I find a lot of people are a plus people like there, go go go, they want to keep doing everything.
A lot of times people say to me, Well, I’m going to take care of everybody else, and then it’s like, well, what are you going to take care of yourself because you’re going to run yourself into the ground, right? I think supplements.
Certain supplements help I feel like five HTP is great for like a sleep aid, that restful REM sleep that people don’t get with fibromyalgia. I have a there’s one supplement I always recommend to people is doctor’s best D ribose. This helps with like pain, and just helping with your energy and it’s great for people who don’t have fibromyalgia.
So I think you have to there are so many different things out there to try. I just feel like we only focus on one thing like supplements are great, but if your food choices aren’t the best thing you really should be started with your food and then there’s always the mindset of, are you going to do this? Or are you gonna make excuses, right? And then also we have trauma, I feel like trauma plays a big part, and health conditions also. So are you dealing with whatever trauma you’ve been holding on to for 20 / 30 plus years?
Anthony Hartcher 10:24
And so in terms of, I guess those three areas like so what do you do around, you know, to help you manage stress or what works for you and then, in terms of how your diets changed over that decade if you could also share that and, you know, you’re, you’re obviously have addressed some past trauma, which has also helped.
So just what sort of therapies helped address that past trauma. So if you could just touch a little bit more detail on those three areas that are really that you’re focused on that have helped you overall.
Amanda Elise Love 10:57
Yeah, for trauma. I think the biggest thing for me is that lately, I’ve just been, I talk about my trauma. I talk about it a lot. Um, I grew up with my parents divorced by parents, on my step, finding out my stepdad, my dad got remarried, I was only eight years old and I had this trauma of going over to their house, a lot of just emotional stuff going on, and everything with that and, and not being able to speak up for myself at that young age.
I think, finally, now in the last year, I’ve gotten to the point where I speak up, but I think you have to address it and you have to forgive those people because they’re doing the best they can they did it.
You don’t know what their story is quite, you might not know your parent’s story, but I think you can say, Oh, I’m gonna move on from that trauma, right? I had a family member who passed last August. So for me right away, I was like, well, this person’s, like, the closest person in my family that I’m close to home, they passed away and I was like before they passed, I went on to my church’s website and I saw that there was a grief group, and I spent, and I signed up within that day and they passed that following week, only missed the first meeting and I spent 13 weeks and with that grief group, two hours, every single Thursday, from 6 to 8 pm and then there was also a workbook.
So I was working on that daily and I think a lot of times were like, We don’t want to talk about oh, I am going through this horrible, horrible time in my life and we don’t want to talk about it, but then I find it’s so funny because when I say this, like I posted, like during the holidays, that I was like, I was saying how the holidays were like horrible.
That’s what everybody was like commenting and saying all this like positive stuff and I wasn’t saying it to like get sympathy or anything. I was just being real and I think that’s what the biggest thing is, is people love when you’re real and I think people need to know that you’re going through whatever that difficult time is and we’re all going through something difficult right now with being locked down and not locked down. The Coronavirus and all that so I think you gotta ask people, What are you dealing with? If they say their deal? They’re okay. They’re probably not really okay. Dig a little deeper.
Anthony Hartcher 14:11
Yeah. Might be takeaways from what you just said is really speaking up you know, having a voice and having a say and, and I think you then follow through with that too then say that, you know, now you speak your mind you share a lot so you’re obviously sharing what’s going on you’re being authentic.
So people are really connecting with the true you and there’s no fake avatar that everything’s perfect and rosy, and that’s, you know, social media can certainly create that perfect avatar but, you know, it’s not authentic as to everyone in life encounter problems, and I think, you know, we we do need to articulate, you know, those problems for people that you know, care for us. so that they can, well, you can’t support someone unless you know that they need help. Right and so I think that’s what you’re saying is when you speak out, people realize you need help, and they you actually get help from speaking out.
Amanda Elise Love 15:12
Yeah, and I also find, when you speak out, it’s good. It’s, it’s really for you, and I think a lot of times, we don’t speak out that what we’re going through, we just like, oh, I’m just gonna hold it in, and then it stresses us out, and it stresses our bodies out, and then our immune systems go down the toilet, because we’re so stressed out, and we’re not sharing anything with anybody. So you have to find at least one person with that you could share whatever struggles you’re going through in life.
Anthony Hartcher 15:47
Yeah, so important that we have those close allies so that we’re where we feel safe to share everything and, and not feel that we’re being judged, and we were feeling very supported. So it’s really good that you’ve, you know, learn from the past and you now, you know, speak out and you’re more proactive on that front, because of that earlier childhood experience where you felt that, well, you wish you had spoken out, but you didn’t at the time.
That’s your sort of carried that for many years, on the nutrition or that there’s got to stress because that closely follows the trauma is you know, so much stress goes on manage, and unchecked unaware. So, you know, that past trauma can lead to chronic stress, essentially. So, you know, certainly when we suppress feelings suppress emotions, we don’t speak out, that stress builds up within us to a point where it’s expressed, it’s manifested, essentially, and it can manifest itself through conditions, health conditions.
So in terms of what you’ve learned around stress management, and you know, you’ve articulated before that a lot of the people you talk to with fibromyalgia are these type-A people, and type-a people tend to carry a lot of stress? And yeah, so please share that your stress tips that have worked for you and what you do today to proactively manage the stress side of things.
Amanda Elise Love 17:22
Honestly, I think stress is like, the biggest thing people are always dealing with. For me, personally, I get out, I try to take, I try to get out in nature, and take a walk, just getaway.
Get away from ever using social media get away from your computers. I think a lot of times we’re constantly on the computer constantly watching TV, constantly have our screens, if we’re reading and so I think the biggest thing is getting away, even if it’s for a couple of hours get out in nature. If you live, like we’re somewhere like that there’s a beach or there’s somewhere to hike do that, or just go downtown, I think. I think live our stress. It’s a work in progress, right? I mean, I’m not going to, I’m going to be honest, I still struggle with that. That’s one of the things, the biggest thing I struggle with, um, but if you have, like, make sure to have someone who you can talk to about those stresses them, why?
I think in life, we just are like, okay, I can deal with it on my own. I don’t need some outside help, but maybe you need some like outside help. Maybe it’s a family member, or maybe it’s professional help. Right. I think it’s okay to ask for professional help if you need help with that.
Anthony Hartcher 19:00
Yeah, agree on it again, as you said before, it’s speaking out and saying, Look, I’m not in a good state, I need help and, and, and actually seek and be proactive on that front as opposed to waiting until that point at which you can no longer tolerate or bear it or live with what you’re experiencing.
So nature is a big, and I must agree with the nature side of things. I certainly resonate with what you’re saying about nature, it certainly calms my nervous system makes me feel very grounded and I need my nature time. I always look forward to it and schedule it in those walks and just stepping outside getting some sunshine, observing nature now the birds.
So that’s brilliant. In terms of your nutrition, you mentioned that, and obviously, you spoke about those intolerances to food and you remove them over there. So I’d like to hear what was your diet, like a prior diagnosis of fibromyalgia? And then what did it morph into? You know, in terms of where it is today. So if you could just sort of share that comparison of that journey that you’ve been on around nutrition.
Amanda Elise Love 20:17
Yeah, my journey with nutrition. So I just, I just answered this question with someone else. Yeah, I’m up for me. I was just the normal American diet, I hope. I think it’s funny. Um, a lot. I thought it was healthy and so it was just the same. I mean, I had oatmeal, I had cereal, that type of thing but not cereal.
I mean, not cereal as much because I knew really young at like, 10 years old. Like I knew nutrition plate. So I was, I didn’t have a lot of I did, I don’t remember having a lot of soda growing up. I don’t know. I mean, we had, we had like chocolate pudding in our lunch boxes. Um, I think we had, it’s just your normal like, vegetables, fruits, protein, carbs at dinner, maybe a dessert. It wasn’t like dessert all the time and we didn’t go out for like fast food or restaurants or anything like that but I mean, I was having those allergenic.
Those foods that were, I couldn’t, I shouldn’t have, I was having eggs, I was having like, wheat toast. and stuff. So I was having, I was having cheese. I was, I remember having, I was really into omelets before and then I found out it couldn’t have that and so it wasn’t like it was a horrible diet. It wasn’t like a lot of processed foods, or anything like that, but it’s foods that my body just couldn’t tolerate.
Anthony Hartcher 22:07
And your journey has two, obviously, you then eliminated them from your diet to really help manage your condition. What are you now eating today? And how did you I guess grow into what you’re eating today.
So a little bit about that, that story to work because you’re a registered holistic nutritionist. So um, you know, there’s a, there’s a piece of education that’s come into your decade there that really helped facilitate you eating better and please share.
Amanda Elise Love 22:40
So for me, personally, I still eat vegetables. I don’t eat as much fruit lately, but I’m proteins. Big. I’ve been trying to be more protein-conscious at every meal, and stuff like that but I mean it. It takes time I eat extremely healthy. Um, I think the problem the thing is, I mean, I still I mean, I still have sweets once in a while. I’m not gonna not say the that but I think for me personally, it’s still like, I’m still learning, right? I think with your eating habits, you’re always like, okay, what can I do better to get in better health?
Right and for me, personally, I mean, my immune system is way better. I mean, I still struggle with that a little bit but, and I still, and they still deal with like some hormonal stuff going on but I mean, for me, personally, I find you got to keep tweaking little things, little teeny things. Once you go off, once you get rid of those foods and you really, there’s not a lot to left, except for tweak a little bit, right. Tweak What, what’s working, what’s not working.
Make sure you’re having those foods that make you feel good. I think tracking everything. Not not tracking, like diet culture, but tracking like, Oh, what is my food? How am I feeling with that food, that type of thing? I think a lot of times drinking water. We don’t drink enough water, especially if you’re in like a hot Arizona but I mean, we don’t ask ourselves why we had that headache. We automatically just go straight to the aspirin. So ask yourself why you have you’re dealing with that health condition.
Anthony Hartcher 25:00
So it’s really bringing to the forefront the awareness of the effect that foods have on you in terms of how you feel about it after having it. So you’re constantly checking in saying, Well, I’ve had this in my meal. I’m feeling actually energetic and feeling alert and feeling. Yeah, or I’ve had this, this is what I have for lunch, but just it’s not sitting well, it’s not digesting well. Feeling a bit queasy.
Yeah. So it’s, it’s really I think you’re what you’re saying is, it’s not, you know, that hardcore diet culture is taking the calories, you know, I had this many calories. Oh, that’s great and restricting myself for this, what you’re saying is just get connected with your food and understand how your body’s responding to that food?
Amanda Elise Love 25:48
Yeah, it’s, it just comes down to this to listen to your body and see like, how am I feeling that day without food? If I if some if you have a cookie? Okay, well, how do you feel a couple of hours later, after you had that cookie? Um, why did you have that cookie? Maybe you’re dealing with some stress, maybe it’s a hormonal type of thing.
I mean, like, I know, my body well enough to know, like, if I’m dealing with stress, I might be getting a headache, or I get it, I get one major headache a month, I used to get headaches all the time from what I was eating and I think we don’t people are like, well, I eat healthily, well healthy, doesn’t. It means so many different things.
So food can play a part in those headaches and I think people don’t think about that, or maybe you’re just dehydrated. So multiple things could be contributing to the headaches contributing to the fatigue. So just don’t think it’s one thing.
Anthony Hartcher 27:08
Absolutely, so yeah, it gets more connected with your food more self-aware as to how your body’s responding to what you’re putting into it. Just there are two other areas I want to touch on. Given that you’re a holistic nutritionist.
One being exercise or movement is probably a better word, and the second being sleep and I know on your website, there’s an ebook that people can download around sleep.
So in terms of fibromyalgia, you know, people are experiencing a lot of pain, as you mentioned, tenderness, fatigue, IBS related symptoms. That the let’s start with exercise. So when you’re in that state, you know, when you’re first diagnosed, the last thing you’re probably thinking of is doing exercise, right? You just didn’t have the energy. Your body was in a pain. Yeah. So that journey with I like to say movement, so let’s, let’s talk about Yeah, that side of things.
Amanda Elise Love 28:11
Yeah, with so much healthcare, I completed that personal training program, which was like six hours, four days a week. Um, after that, I completed that program, and I was an I love to exercise, it was my thing. Um, I was like, okay, and also, like, when I couldn’t go to the gym, it, I quit my gym membership after like, six months. Um, I was like, ah, and I wasn’t doing much exercise for a long time, besides walking the dogs and even that was excruciating and I know it’s, it’s moving is hard.
I feel like I think a lot of times with movement, I think you what, people have fibromyalgia. People are so funny. They’re like, well, I want to work out and move. I’m like, well, let’s get you back to having a restful sleep first before we worry about movements. I feel like movement might be the last thing we would work on, honestly, because you’re not if you’re exhausted, you can’t you have no energy to work out even go for a walk or do you can’t do the basic activities like cooking or anything like that, and so movement is not the thing you should be focused on first and then once we get to movement, maybe it’s just walking around your house or just something simple like that, not like anything strenuous like not what I do now, personally.
Anthony Hartcher 29:59
Which could be really hard for a type-A person, right? That typically has that type A mindset of got to go hard and you know, do hard exercise and really get the sweat off. Yeah,
Amanda Elise Love 30:11
I used to be the type I was like, cardio and then, when I was, when I was super bad, I was like taking the dogs for excruciating, long walks and I think you have to realize it’s going to come back, you’re going to get a life back, but you can’t put so much strenuous exercise takes a lot could take a lot out of someone If they’re ill, and like, somewhat healthy. That’s a lot. I mean, when you’re first starting out, it’s a lot when you’re a beginner.
So I think people need to realize when working out, you have to realize, yeah, working out, it’s great and it’s great to move your body, but maybe just start with something simple, like stretching or something. Yoga, something light. You know, walking, walking is amazing exercise, I don’t think it gets enough credit.
Anthony Hartcher 31:16
I agree. So yeah, light and gentle, and you mentioned in terms of prioritization, it wouldn’t be the highest, you know, it would be lower down the priority list in terms of, you know, recovering or at least improving the way you’re feeling from the condition and you mentioned sleep in that.
So let’s talk about sleep, and how was it for you and I guess it’s really hard to sleep when you’re in a lot of pain. So obviously, it’s improved, what are you’ve done around sleep are really focused on it and prove it.
Amanda Elise Love 31:53
I think the biggest thing is just, I decreasing the stress, I have really high cortisol levels at night time and then stuff I actually got. That was one of the things the wellness chiropractor did, but I think you have to de-stress, get darkening curtains block out all that light. We don’t want any blue light. We don’t want anything your cell phone should not be by your head, right? I think a lot of times, we have our cell phones, and we’re just looking looking looking at them.
I think supplements are great for sleep, and, um, make sure you’re eating. Don’t eat too much before you’re going to bed. Just destress your body. No social media. Like I think a lot of times I think sleep is one of those things where we’re like, well, it’s the last thing I’m going to work on it and I always tell people, it’s the number one thing you should work on whatever health condition you have because if you don’t have your sleep right, then how are you supposed to give back to people in this world? How can I be on this podcast?
How can I get back to people with fibromyalgia? If I don’t have enough sleep? And for some of us, that might mean more sleep? And that’s okay. I feel like everybody needs at least nine hours of sleep, but make sure you’re getting up at the same time going to bed at the same time. I feel like if you’re super stressed, maybe you need more sleep.
That’s how my body works. If I’m stressed out I need more sleep, or it’s a hormone thing to also so like I didn’t we are asleep during that time. So I think you just have to track like why am I not sleeping? What did I do? That night was like up at 11 o’clock midnight, we all should be in bed by 10 o’clock. Want to get that restful REM sleep you should not be up to one o’clock, two o’clock, three o’clock in the morning.
Anthony Hartcher 34:21
And that’s very difficult for a Type A person to prioritize sleep, isn’t it because they just think it’s a waste of time. I should be doing things I need to be doing more achieving more and so I can imagine it’s a difficult conversation for type A people.
Amanda Elise Love 34:37
Yeah, it’s interesting. I think people they’re like they know how important it is but then they don’t prioritize it. So if you have to, whatever the health thing that you’re doing in life, you have to prioritize it. That means you have to put it on your planner. Oh, I am going to bed At 10 o’clock, and you’re going to check it off, and you say, Oh, I did it four nights out of the seven days of the week.
Oh, that’s great. I’m least moving forward and now I always tell people don’t like to give yourself a hard time if they mess up. Or if you don’t do it 100%. Well, you did better than last week. Great job. Right, and I think that’s what the thing is, with our house, we have to plan out these things to move us forward. It’s all about being consistent in life.
Anthony Hartcher 35:38
Absolutely, and I can see how that checklist would resonate with Type A people because they feel like they’re achieving Saturday, but you’ve got them focused on improving their sleep, and they’re checking off. Yes, I did that diet is I’ve done it again, and, and they focus on the checklist, but you know, having that health benefit for them.
So yeah, that’s a really good tip. So how can listeners best connect with you, Amanda?
Amanda Elise Love 36:04
And the best way they could connect with me is they get either to follow me on Facebook, which is Amanda Elise Love, or Instagram, which is also Amanda Elise Love and then you mentioned my website’s gonna be in the show notes and the podcast. I mean, the podcast is growing and there are quite a few episodes, guests that solo episodes with me, and the best thing to do is get that free sleep guide. So you could start getting that restful sleep, which is on my homepage.
Anthony Hartcher 36:43
Absolutely. So all those links you mentioned to your social media, your website, I’ll put into the show notes, as well as, your podcasts. So I’ll have all them in the show notes for the listeners to connect with you.
Thank you so much for your time, Amanda Love really appreciated the conversation. It’s been very insightful in terms of talking about fibromyalgia, I’ve never had, you know, someone that’s experienced fibromyalgia. See me in practice, or, or certainly on the podcast. So it’s been fantastic to discuss the condition with you and what you do to manage it and how you help your clients.
So thanks again, Amanda, really appreciate it.
Amanda Elise Love 37:23
Thanks so much for having me.
Anthony Hartcher 37:26
And to the listeners. Thanks so much for tuning in. I really appreciate you listening in. If you’ve liked the episode, or if you know anyone who’s got fibromyalgia, please share it with others because we’d love to get the word out there and help others with the condition.
So thanks again and stay tuned for more insightful episode of Me&My health Up.
Transcribed by https://otter.ai