Ep 129 "Living well between two bookends on a narrow bookshelf" with Lynn Larson Part 1

Are you ready to join us on a journey of discovery, resilience, and empathy? We have the honor of welcoming Lynn Larson who shares her lived experience of over 20 years with fibromyalgia, a condition that was diagnosed when she was 30. She bravely delves into her struggles from her early years to the point of diagnosis, underscoring the vital role that balance, moderation, and shared stories play in managing the condition. Expect a heartwarming journey that shines a light on the importance of community building and shared narratives in lessening the sense of isolation that often accompanies chronic conditions.

As we navigate through Lynn's life, we delve into the day-to-day realities of living with fibromyalgia. The trials of self-diagnosis, the significance of self-care and the interconnectedness of symptoms form part of our discussion. Lynn provides a candid look into her tactics for managing coexisting illnesses, including the Tola Point System for self-massage and the necessity of a consistent sleep schedule. We further dive into the complexities of autism, particularly in women, and highlight the diverse ways it can manifest, from picky eating and routine sensitivity to compulsive tendencies and hypersensitivity.

Finally, we circle back to fibromyalgia and discuss how Lynn has harnessed wisdom and coping strategies to live better. With her tips for self-care and seeking support, she illuminates the path for those battling the condition. We ensure that our listeners leave with a sense of connection and a deeper understanding of fibromyalgia and autism. So, tune in, learn, and find solace in shared experiences.

The fibromyalgia starter pack  categorizes the episodes in a way that is more accessible for those new to fibromyalgia.

Transcript

Speaker 1: 0:42

Here's some of what you can expect on this week's episode.

Speaker 2: 0:46

That whole moderation aspect or the balance aspect. I used to joke that having fibromyalgia was like living between two bookends on a narrow shelf. It sounds limiting and I don't mean to make it sound that way, but I have found that I just have to be so intentional, pay attention to everything. Fortunately, I have a very disciplined type of personality, so it works for me. You made some comment, too, about the brains of fibro. People sometimes come alive at 9 o'clock or at the end of the night and I went yes, I was yelling out while listening to that. So, again, that was just another example of something new that I had learned, I think overall. When I heard your podcast, it was more like wow, here's a doctor that pays attention, that cares, and here are the stories of these other people. I'm truly not alone. And then hearing what other people have done for success, so often mimicking what I've already learned, but yet it was confirmation that I have approached things in a good way and I knew that. But just to hear, I want to have that. I guess connection with other people is something that lacks when you are just living in an environment where all your peers or family members are totally healthy. It's that sense of hope.

Speaker 1: 2:13

This is the Conquer your Fibromyalgia podcast. I am Dr Michael Lenz, author of the book Conquer your Fibromyalgia Real Answers and Real Solutions for Real Pain. I've been a doctor for 27 years now. I am a pediatrician, an internal medicine doctor. That means I see patients from newborns all the way through later adulthood and in between. I also am a diplomat of the boards of clinical lipidology, which has to do with trying to prevent heart attacks, strokes, through an in-depth understanding of cholesterol-related problems which, as we've heard earlier, occurs more in those who have fibromyalgia, as well as a diplomat of the board of lifestyle medicine, which is an area of medicine that uses evidence-based medicine to help people live better, using a healthy lifestyle, focusing on non-medical ways to optimize your health and even reverse illnesses like diabetes and heart disease. Remember that this podcast is meant for informational purposes only. All signs and symptoms should be discussed with your own individual doctor. And now on to this week's episode. I'm excited to have a special guest. She's a listener of the podcast. Her name's Lynn Larson. Welcome to the podcast. Great, thank you for having me. Yes, she just said reached out and emailed and just said that she really appreciated it. And we got to emailing back and forth and asked if she wanted to share her story. And she's willing to share what she's been through. And again, for those of you who have listened to the episode series I did on narrative medicine and then the one after that on poetry, hearing other people's stories can help you feel like you are not alone. Now, not two people who are like, who are going through fibromyalgia and her story is her story. But there are a lot of themes that we can learn from that. So I asked her to prepare ahead of time a framework, an outline and putting down what she's been, and sometimes it's five pages worth of information and sometimes it's only one or two pages if you're only 22 years old and only have had it for a couple years. So welcome.

Speaker 2: 4:47

Great, I don't even know where you want me to start. I'll let you lead the way and I can fill in from there.

Speaker 1: 4:53

Tell us a little bit about yourself as a person, and then your story living with fibromyalgia.

Speaker 2: 5:01

I can start right off the bat by saying I'm one of the five page variety people. By now I'm in my fifties and the journey started way before this. But I think the diagnosis really came when I was about 30, 31 years old. And your question of me about even childhood things really got me thinking and I realized how challenging of a child I think I was or maybe you could ask my mother and she'll chime in here. But just before we get into that a little bit, I can say I want to almost give the ending first, to give people hope that if you stick around and listen to this to the end, you'll see that there is some hope and there is some yes, still joy and if you are suffering from a condition like this, you don't have to just give up on life. So I'll just say that right from the beginning, because now I'm more than 20 years into this.

Speaker 1: 6:04

Great. I think just taking the exercise of writing your story has anybody any physicians or medical providers ever had you write down your complete story and journey with this before.

Speaker 2: 6:18

No, no, and in fact, just in thinking about the whole story, even getting to the part where I was tested for everything under the sun, back when the symptoms started, and you name it, it was testing me for MS, als, lyme disease, lupus, who knows what else. It's been so long now I can't even remember, but it took a good three years before the diagnosis came and truly, I was the one that, I think, put the idea into the head of one of the medical people I had seen at the time. So again, three years into it, and I happened to be reading a magazine that had an article about Fibro and I thought this is it. This is the best thing that explains everything I've been going through. And I brought that in and the medical person it was a PA, and he starts pressing on the tender points that was so common, especially 20 some years ago, and said, yep, that's what I would call it, and off I went. I don't remember any sort of discussion. I don't remember a whole lot of guidance. It has been what I would say a one person journey here, but then again, finding your podcast and I know there are others as well really just made me. Even after all this time it made me feel validated. I thought I'm not alone in this, even though you're alone when you're in your own friends and family group. You're the odd one, so to speak, and I think I mentioned to you early on that, even though after all these years I've definitely found a way to keep the symptoms fairly minimized, that doesn't always translate into the mental aspects of this illness just trying to still not always feel so weird about it, always feeling like I'm the first one to leave a big social gathering or event because I'm trying to keep my sleep schedule on target. You name it. Now I'm getting a little ahead of myself here, but I don't know why, don't if you want?

Speaker 1: 8:31

no great you're doing a great you're doing great many people who are listening. It's more than normal that it's been years before somebody gets diagnosed, especially 20 years ago when there wasn't the internet as podcasts, youtube. Even in the last couple years that's only been something that's been out there as much. But just to make the diagnosis and then, like most, there was not any solid program or education or discussion and then you were left to fend for yourself. And I've said that and I think you've only listened to, as of the time of the recording, eight episodes and haven't gotten a chance to read the book yet. But if you Read the book and listen to the episodes, you will know way more than 99.9% of the medical field when it comes to this, because it's not something that's really well taught, you almost have to be interested in it because it's affected you in some way. I just became interested because I cared for the people who were struggling and 20 some years ago. I'm like what is going on with people? We are like yourself and I never accepted the answer that these are Hypocondriacs. I always had a big heart and I wanted to understand, but we didn't have a lot of information and and understanding like we do now.

Speaker 2: 10:24

You know I was gonna say even now, here I am, this middle-aged woman. I'm sorry I'm not the only one that says this. Even healthy women will say if they go into their doctors with something already, you walk in like You're a problem. I just think middle-aged women and their aches and pains sometimes get dismissed, and when I was as young as I was, when all of the fibromyalgia symptoms started happening, then it was almost the opposite problem. She's young, she's healthy, what's the matter with her? I'm of a good weight. It's not like I was carrying any extra weight and I had good numbers with cholesterol and blood pressure and all of that. And so you're right. I did feel like a hypochondriac because it was all seemingly unrelated symptoms and in fact I used to joke in my friend circles that I have the lind disease because I didn't have a name for them.

Speaker 1: 11:20

I've got a headache here and I got these achy legs and my stomach is problematic patient who has been severely struggling, starting with long-haul COVID over a year ago and never got back and then really crescendoed this fall. She was going to the ER and physical medicine, rehab and rheumatology and primary Hair doctors, severe, debilitating pain, even getting admitted to hospital. All the same labs that you've had, all of the same work up, completely normal. She'd walk in, they go, oh you again, and you could just feel, why are you here, you're fine, not Faking this, completely living this and now no hope. So getting back to your story, which probably a lot of people listening can be validated and I think that's so important. It's part of the book. When you read the book, the first four chapters, I share stories and I've had people cry, especially if they are still in the midst of struggle, because while there's an actual doctor out there who doesn't think I'm crazy and Actually validates their story but telling the story, in the beginning there was Lynn.

Speaker 2: 12:38

Yeah, going way back to childhood. No, I Looking back now just because, knowing what I know and reading other people's stories or hearing about them on a podcast, I started to think and my wow, one thing I think I was born a picky eater, or just someone that was picky about everything as a little child how my you know bed covers were, when I was sleeping, the things that I ate. And by the time I was around three, apparently, I was so cranky and hard to deal with that my parents took me to the doctor and said what is wrong with her? And that's when he had diagnosed that I was anemic and put me on iron medicine for a while. I Don't know if that helped or not. I really have little memory of it. I do remember the iron medicine, I must say, because it took both my parents I Involvement to get that medicine into me because I was not having it. So there was that. And then I remember recurring bouts with just gi issues. One time it just hurt so much that my parents took me into an urgent care. It was a weekend and we sat there so long, as is the case so often, and by the time we had been there for hours. It's oh, I guess I'm feeling better. Now. What's that coming and going, that sort of fleeting pain or fleeting whether it's aches and pains or the gi stuff. And, truly, the first time I remember having that fibromyalgia, like pain, which for me is usually just a deep aching it was in my legs when I was around 14 and I don't know if it was my parents at the time or maybe they took me to a doctor. Someone concluded it was just growing pains. So here I was, 14, but honestly I didn't grow any taller after that. I'm a pretty short person. I stuck at five foot two inches and so I don't think it was growing pains. But then, even just to try to deal with the pain, I was taking ibuprofen on a daily basis and I didn't think that helped at all. And I can say, fast forward all these 20 years, I don't think any of these over-the-counter remedies, whether it be Tylenol or ibuprofen, I really don't think they helped. I have just learned that the best remedies are just through Movement and stretching and things like that. But that truly the 14 range was probably the earliest memory of that fibromyalgia, like just heaviness and achiness. And Then I got into college and got busy and I told you in an email that I made terrible choices Through my college years terrible diet Also. I was just I don't know. I felt pretty crappy all the time but I looked at what I was doing and staying up late, not sleeping, as is a lot of college students. But I got into the workforce after I graduated and I was in retail management and even though I was a manager, there still was a lot of Moving of merchandise, unloading trailers, stocking shelves. It was pretty physical and not even two years went by when I just got chronically exhausted to the point where I went to see my doctor at the time, who was fantastic, and he listened to me and how exhausted I was feeling and just suggested that maybe I find a different work environment. That just wasn't sustainable for me anyway, and so I left that whole retail world and Few years later I was more or less on a desk job and I started to notice some like tingling in my shoulders and my fingers. I would get some muscle twitches in a course at that age again, I was in my 20s you start thinking about things like MS really scary and serious and Started then going in for all these tests and I still was getting some different aches and pains, and I mentioned some headaches, and it was all just puzzling because it seemed so unrelated. All the different things that I experienced day in and day out. And then sleeping too. I think anybody with this illness knows that sleep can be so challenging, and that was the case for me trouble falling asleep, trouble staying asleep, and every day of my life I think I've woken up groggy, not refreshed in any way a shape or form. So after all these tests and after the conclusion that I did have fibromyalgia, then I had to figure it out on my own. So how did you figure it out on your own?

Speaker 1: 17:18

I mean dealing with it.

Speaker 2: 17:18

I like I said I practically diagnosed it myself when I saw this magazine article. It was trial and error. And I remember very early on I had all this stuff going on and I was like, oh, I'm going to be in a hospital. I had all this pain going on and I thought I can be in pain laying on the couch or I can be in pain out walking. So I'm going to get off the couch and I'm going to go out walking, because if I'm going to have pain, I might as well do something more positive. And so just being out walking it would be like, oh, this pain is going away now, it's just really lightening up. And then I just started to realize I would get knots, but that's what I call them different parts of the body. For example, there were days when I would feel really nauseous and then just all of a sudden I would put my hand on my shoulder and I'd be like, oh, if I press really hard in this little naughty spot here on my shoulder, I don't feel so nauseous. It was just bizarre. Everything was connected, everything was related. And so I guess that's when I got into more body work Let me make sure I keep moving that I do regular stretching. I got into yoga at one point and then I really learned about deep breathing, because I think that was another thing. Early on, actually, there were so many moments that I'd be out walking and I'd feel like I can't catch my breath. And again, I've always been like in shape, I've always been just a recreational athlete or just always been active, nothing competitive, but I never really knew how to breathe and it was like I can't catch my breath, what's the matter with my heart? So I got into yoga and then that deep breathing really took hold in a positive way, and so, just through all of these different approaches, it was suddenly like okay, now I know if I get up. Just even a week or so ago, I got out of bed and I had such neck and shoulder pain. It was so bad. This does not happen very often anymore, but it was so bad. I couldn't even sit up in bed because the neck pain just prevented me from lifting my head. Did you know there's all these muscles in the neck that you know you need to just to get out of bed? And so I thought I know this won't last. I know I have to do some work on my neck and I have found these fantastic massage tools. I don't know if I can say a brand name online, but it's called the Tola Point System, so it's T-O-L-A point system. They basically equate to these little blue I don't know. I call them blue mountains plastic things with different size of tips. I guess tips is the right word, but you can really work them into your knots, whereas I used to say to my husband hey, can you dig into this knot? I wanted deep tissue work and I know that is contrary to some fibromyalgia patients. They don't want to be touched real deeply. But I wanted someone to just dig right into these knots because you could feel them break up. I've had massage therapists say it feels like your body is full of rocks, so they would work them out. But again, I can't be running into massage person every day. So anyway, I found these Tola Point System, these little plastic things, and I can do all that body work myself. I've got a good foam roller. I can really get in those knots. But it doesn't happen nearly as often as it used to, because I just know I have to stay active. And then, on top of the fibromyalgia diagnosis, then you know this, last 20 years I've just had a whole bunch of different things. At one point a GI person said you've got IBS, because those again, those GI pains would continue. And so then I figured out, okay, to really minimize the GI discomfort, it required just eating slowly. And it sounds crazy, I think, to some people, but I've seen how fast some people eat. It'll take me 30 to 45 minutes to eat dinner, for example, and just that slow eating made some of that pain go away. It's just been, you know, just miraculous. But then it was about back in 2015,. I was having some very clear signs of a bigger, more serious GI problem and colonoscopy. Later I was diagnosed with ulcerative colitis, which I have to manage through medication and after maybe a year of a terrible flare of that, it's been largely under control for the last six, seven years. So very grateful. But all these things kept coming up. And then two, we start to wonder is this fibro? Is this something else? It's so hard to know where one ends and one begins, or the separation, and not that it matters. But again, even after that diagnosis, I thought good, I'm done, that's the diagnosis, I can just move on with life. No, because things keep happening. And just when you get comfortable with what you have. The new symptoms get piled onto that and you have to start to address them. Really, what's been plaguing me the last few years? I started getting some real sharp back pain. Just that movement of tying your shoes I could get a shooting pain that would just make me freeze in place and I'd have to be just so careful about what I was doing. I happened to find a really good doctor in urgent care who said you've got SI joint dysfunction, si the sacroiliac joint. He said it's too flexible, some people it's too stiff, but yours is too flexible and it just it's wonky. You move and it just keeps moving out of place, so to speak. So I went through this wonderful PT program that taught me how to lift, how to do daily tasks, even like bending and brushing your teeth over the sink you name it. Went through this whole program and I just learned so much about how to move correctly, how to take care of myself. I maintain a strength training program at home just based on what I learned through that. One thing after another.

Speaker 1: 23:51

Wow, what I'm hearing is that you had to do this on your own, trying to experiment, and you started to realize there was some things that you can control and I had a doctor, marta Ralla, who's a pain psychologist on an earlier podcast who calls it the locus of control that, oh, there are things that I can do that positively impact me retrospectively. There are things that can really make it bad, like living a college lifestyle Absolutely, and then you realize I'm going home early. Let's leave at 830 so I can make sure I can get home by 930 and get my relaxation and get into bed. All of those are great lifestyle choices that have an impact. And then people can also develop other coexisting illnesses, like inflammatory bowel disease. About 40% of people with inflammatory bowel disease also have IBS and that's not uncommon. Have you ever been on any prescription medications for fibroin related issues?

Speaker 2: 25:04

No, no. I have truly found that all of the things that I have pursued have largely managed it. Again, that's not to say life is perfect. I just mentioned waking up with a horrible neck pain, but it was gone by the next day because I just took the time to work on the offending knots. It's not just movement, though, and with the SI joint dysfunction that I have, I almost can't sit longer than 20 minutes, and just my hips are hurting so much. The movement is truly the core of my day, but it's also sleep, as we've already indicated. It's making sure I have a consistent sleep schedule getting to bed at roughly the same time, getting up at roughly the same time, and I found that if I even get a late evening phone call, that sort of wakes me right up, you get engaged with something it's harder to fall asleep, so I almost have to start by 8.30 in the evening at all. Right, let's try to minimize noise, let's just start dimming the lights and just work my way into sleeping. So there's that aspect, and I am very protective of my sleep. I know that if I do have some out of the ordinary social thing, that will keep me out later than I would normally I just know not to schedule anything the next day. I just know that chances are, even if I still sleep 8 hours, if I'm going to bed at midnight I don't feel well because the timing is off. So again, consistency doesn't even mean just the number of hours sleeping, it means the timing of it. You want to have fun sometimes, right, I have fun a lot of times. But when you do stay out later, at least for me, I just know I have to plan accordingly and it's all about not scheduling social things back to back, whether two things in one day or even two days in a row. It's that whole moderation aspect or the balance aspect. I used to joke that having fibromyalgia was like living between two bookends on a narrow shelf. It sounds limiting and I don't mean to make it sound that way, but I have found that I just have to be so intentional, pay attention to everything. Fortunately I have a very disciplined type of personality. So it works for me. But other people who are more used to I don't know, I guess just being more spontaneous, more random might find it hard to have that consistency that I'm describing. But if you really do the work, you can continue to have a relatively normal life is what I think.

Speaker 1: 27:53

Anything else to add for those people out there who are listening and struggling?

Speaker 2: 28:02

I think diet is huge. I haven't mentioned that yet. Maybe too, just having GI ailments that I do, the diet figures into that. But I think I've already demonstrated. My college poor diet made me feel awful and it was truly over time over the few years getting out of college when I realized, huh, I'm at the point now where I avoid preservatives, I avoid additives, food dyes, you name it. I focus on whole foods. I really limit my meat consumption. I maybe have red meat, I don't know. Once, twice a month Might have chicken every other week. I largely have a vegetarian kind of diet, plant-based, I know for sure. The sugar is so problematic and again, I'm lucky I do not have a sweet tooth. Give me a bag of potato chips, I'd be happier than with a pan of brownies. But certainly I have had experiences where one quick story just going to an afternoon tea event at a fancy hotel in the area and of course with tea they bring out a whole tray of different sweets and scones and things like that To appease my friends who just loved it. I said, ok, I'll take a bite of everything, but even just a bite of everything. I drove home feeling so awful from the level of sugar that I had ingested that afternoon. And the most startling part of this story is I got home and a neighbor who had this fabulous garden gave me a big bowl of vegetables. I was like great. I went in the house, I made a salad, and as I was starting to eat the salad, I could actually feel my body get better. It was completely amazing how I went from feeling so awful from the sugar I was having to eating raw vegetables. It was outstanding, and so I think that is hugely important what you eat, how you move, how you sleep.

Speaker 1: 30:06

Sadly, the average person who has fibromyalgia eats about three to four servings of a fruit or vegetable in a week. The average person eats one serving of fruit or vegetables per day. So I think part of it is when you are in pain. We go for the comfort foods, and food companies in the Western world don't do us any service. Our neighbors often don't do us any service and give us these calorie dense foods that are high in processed carbs and high in fat and salt. For you it's the salt. Turn the sugar quickly. Potato chip with fat Brothers, it could be some high processed carb with not necessarily a lot of salt, or they might be into the very high fat meats and the cheeses and the oils and the fried food that may help them in the moment and the maturity you've developed since college. And I often do for my younger patients and really for my older patients, but as a pediatrician and an internist, somebody, teenagers who are having a more diverse social life and opportunities, shall we say More, struggling with migraines is a common one in adolescence and I'll say well, for two weeks can you get up at the same time, which is the same time. You have to get up five days a week for school and I want you to go to bed at the same time and try to aim for about nine, nine and a half hours of sleep, get regular exercise et cetera, but just to sleep. And I say do it for two weeks, because if I say do it for the rest of your life, you'll never do it. So try it for two weeks. You catch and you start feeling better the first week. The second week you're feeling a lot better. Headaches often go away and I say, okay, now you got better. Who's to blame If you start getting migraines again? So just tell your friends I'll meet you for breakfast at 6.30 in the morning or something. I know it's not cool and as you've learned as a mature woman going through this, yeah, I just come heading out. Okay, I'll just slide out. And you know that your nervous system has certain needs and demands and you just accept that if you keep hitting your head against the wall, metaphorically, you're going to just pay for it. But as time comes on you realize what works. Well, I mentioned in the book, eating a whole food, plant-based diet has reduced the symptoms in half, and with fibromyalgia it's all a combination of those. Interestingly, I just am in the middle of editing and will be likely live by the time this comes out A series on autism and fibromyalgia and there's a strong connection. And what we think of autism isn't what we necessarily understand. Most adults, let alone women, are not diagnosed with it. And what's very interesting is picky eating is on that continuum, being hyper sensitive and change of routines. And you didn't have anemia when you were three years old. We don't. You didn't have that. But the doctors here try this Just like a doctor. Now we have to try, say something's wrong. The tests were normal, but maybe she's anemic. Give her something that actually makes her gut hurt. And the reason you didn't want to take it is because it made your gut hurt and you had constipation and black stools on top of it. But it was a placebo effect and like we're doing something, almost like a punishment, getting back to you to take a bad medicine. But back then, that hyper sensitivity, that pickiness may have been part of that spectrum.

Speaker 2: 34:01

Oh, I agree. Actually, I've often joked with people if ABC's program the good doctor.

Speaker 1: 34:09

Okay, yeah. We're really, I saw a couple episodes, yeah.

Speaker 2: 34:12

Okay, all right, and not the genius part of it, but I watch how he wants his food a certain way or things organized a certain way. That is me. My family all says I'm obsessive, compulsive about things, but I actually see some of these. What you traditionally hear of is some autistic type of behaviors. I still have ultra sensitivity, especially to smells. I can't even be around certain people with the perfumes or the colognes they're wearing, or laundry detergents with a certain aroma Just makes me running far away as I can, so I can, and I don't like tags on my clothes. I cut them all out. I still have all of these quirky things where everything has to be a certain way.

Speaker 1: 35:01

So I'm not your doctor. But as I talked with Dr Hauser, she found out that she had autism when she had a daughter who had developmental behaviors that were consistent with the spectrum, and then she said I'm like that. And then she went through being a young doctor called disrupted sleep, and she started to recognize I have also ADHD, which is very comorbid with that, and then a lot of restless leg syndromes, what we call growing pains. As a kid, the vast majority of that is not what we would call restless leg syndrome. It's that achiness at night it's hard to get comfortable and hard to sleep. Well, one of the ways you can treat it and most of it's genetic to some degree is by regular, consistent exercise. There are medications that can be used as well. That can make a tremendous improvement to help with quality of sleep as well. But it's interesting again, you might be going. I probably am like the good doctor. And I'm not a genius doctor, I think you're giving yourself, probably coming up too short, but that consistency. I have a patient who is six who's just getting through the diagnosis of autism and also ADHD and was having some behaviors at school, including biting and aggressive behaviors. But now we're getting some medicine and help getting diagnosis. And when you dig deeper and mom has so many great insights she's worked interestingly, like Dr Hauser, with kids who have autism for her job and she said the teachers at school don't see it. What actually she does at school is she's constantly picking up and putting the toys away. She's constantly organizing. She's a neat freak and I go I bet if we had a camera it was probably the kids who took the toys out of the bin and just threw it over there and didn't put it back. That would make her so mad. So it wasn't some chaotic animal child that was just randomly biting, it was because she was expressing her deep frustration. And the other interesting thing Dr Hauser mentioned was like foods, and I learned so much from the conversation. If you haven't gotten a chance, if it's not out yet, it'll be coming out soon after this episode. Like foods are things that are like cucumbers. Every slice of a cucumber tastes the same same consistency. Except for rare exceptions, blueberries are not like foods, like what. Some are juicier than others, some are sweeter, some are tartar, and that's part of that hypersensitivity. And when you get into the autism spectrum, when you get into fibromyalgia, it's just hypersensitivity. One of the biggest stressors for people who are living with fibromyalgia-related issues is clutter. And when you end up living with somebody who has clutter as a problem for them but it's not a problem for you, you can't understand why is that person such a neat freak? Oh, that's just a quirk. But, as Dr Hauser said, a new term is access needs, and those are things that people need for their normal. And so if you're living with somebody down in the spectrum, help them Get that kitchen clean, put things away, don't leave things out, fold the laundry, do all of those and it's a calming thing. Now for those who are just listening, lynn's nodding your head repeatedly Tell me why you're nodding your head so much.

Speaker 2: 39:27

That is me. I don't like clutter. I like everything organized a certain way. My spices are in alphabetical order. Things just have to be lined up. Even if it's knickknacks on a shelf, I'll turn one knickknack, maybe 45 degrees, because that looks better than when it was facing the other way. You name it. I'm not easy to live with, I know. God bless my husband, but I'm just a neat freak, absolutely clutter, and I was like this as a child, and my parents they were neat enough. I was the one walking around the house like, oh, I need to arrange this. I would take things out of the kitchen cabinets when I was even like three years old and put them back in. I would take everything out and put them back in. I mean, I've always thought that there is. Whether it's the autism spectrum or obsessive-compulsive, I have it for sure.

Speaker 1: 40:20

A lot of people actually, when they're younger or currently, instead of the autism, fibromyalgia, adhd spectrum will actually be told they have social anxiety and OCD. Oh, she has to have everything perfectly lined up, or it's called autism, and sometimes those are just part of how their brain works. They have to have consistencies and expectations and sadly it's often not recognized. I'll be honest, I learned a lot just in interviewing her and preparing for the interview and contemplating this. I had a recent 70-year-old patient of mine who came in two or three days, like a week and a half, after I did this interview with her and she said Dr Lenz, I have autism. I know I have autism and I've been seeing her for five. Bro, she also has ADHD, she also has uncontrolled diabetes and she's like my son has autism, my grandson has autism. She jokingly said we're all crazy and I know I have it. My friends think I'm weird. I've always had this deep fascination with rocks. No, I have a rock fascination too, so she and you didn't include that in your story, but I didn't. I joked with her, dr Hauser, going back to her, and I said people with autism, they don't show emotions, they don't have emotions. Because that's what we learned with Rain man is that these very robotic? And what we realized is that to meet the criteria the DSM criteria for autism, those are when the compensatory mechanisms of masking and overcompensating are failing and that's when the obvious autism symptoms come out. That likely is when your symptoms when you were younger and coming out. So fortunately, you've been able to have this inner awareness and you have probably known I'm weirder, quirky, like you said We've had. I'm different and I'm not picking on you because I love helping people who have neurodivergent brains and minds and have a big heart for them, because they are very misunderstood and it's highly likely that a good percentage of people who are listening and living with this go. Oh, that is true. Why am I just sensitive to having a tag that is not fitting properly, for example?

Speaker 2: 43:02

Oh, absolutely. And I think in school actually I was a straight A student and I could memorize anything. So even in college I could be out at a bar and come home at 2 am and read and study for a test and get an A on it the next day.

Speaker 1: 43:16

Genius.

Speaker 2: 43:18

If, maybe, if I didn't spend so much time in the bars in college, I could have.

Speaker 1: 43:22

Okay. I'm guessing, though, that you undersell yourself, and I bet you, when you were younger, you probably picked up things pretty quickly. Right, you were pretty sharp, quick reader, figured things out, problem solved, pattern recognition. All of these are having that awareness, and probably when you're getting regular exercise and sleep, you're not as hypersensitive to those. When you're getting your needs met, you're more tolerant of these issues.

Speaker 2: 43:52

I don't know. I think sensitivity to smell that's, yeah, certain things, it's that artificial smell I can hardly stand. It doesn't matter if I'm rested or not, so it just depends. But you learn to live with all of these things, you just do. It does present some challenges. It's things like oh, I'm going into a business meeting, oh, this colleague here wears a lot of cologne. I need to make sure I'm sitting on the other side of the room from her. I've spent things like that over the years too. Or even the brain things. I don't like work projects that are chaotic, and I struggled with that back on a previous job when there was an implementation of a new website and my boss was just just get it out there. We don't have to have everything perfect and I was like wait, no, everything is methodical and they're step by step things. So, yeah, I guess fibromyalgia can definitely bring on brain patterns, perhaps along with the body things, but it is manageable and that's certainly the key point I want to bring home, but it takes effort.

Speaker 1: 44:59

Yeah, great, you've gotten educated on your own Any insights or things that you've gotten from the podcast that you found helpful, at least from the episodes that you've gotten a chance to listen to.

Speaker 2: 45:14

You said I don't even know which podcast or what episode it was. You made some comment too about the brains of fibro. People sometimes come alive at 9 o'clock or at the end of the night and I went yes, I was yelling out while listening to that. So again, that was just another example of something new that I had learned. I think overall, when I heard your podcast it was more like wow, here's a doctor that pays attention, that cares, and here are the stories of these other people. I'm truly not alone. And then hearing what other people have done for success, so often mimicking what I've already learned, but yet it was confirmation that I have approached things in a good way and I knew that. But just to hear and have that, I guess, connection with other people is something that lacks when you are just living in an environment where all your peers or family members are totally healthy. That's that sense of hope. So I think the podcast overall it's the education component, because you can always pick up additional tips, and then too, it's validation over what you've experienced and having that connection. I've had books over the years and they're fine for some education, but one sided, in a way, you're just reading about the disease or the illness you learn. But the podcast, I think, just introduces so many other elements. With other people and hearing their experiences that just makes you feel a little more, I don't know light. It takes a burden off. Almost is what I would say.

Speaker 1: 46:51

Yeah, great Thanks again for taking the time to visit with us and if you are a listener and you want to share your story, if you just have questions or just want to say hi and give a feedback, lynn just emailed me and that's how we got connected. That is where we will wrap up the episode. Thank you again, lynn, and I know that all of the listeners out there sure appreciate your wisdom, your lived experience and what you have learned over the years to help live better with fibromyalgia. If you have enjoyed this episode, then please check out the other episodes. We are approaching 100 episodes and there is so much good information out there, so many other stories to help you learn and understand what it's like to live better with fibromyalgia. Also, hit the like or follow button, leave a five star rating and review. That way, more people who are struggling can learn about fibromyalgia and live better as well. Well, fibronation, until next week. Go Team Fibro.