Episode 28: Exercise in a Fibromyalgia Body with Megan Densmore

Exercise in a Fibromyalgia Body with Megan Densmore

Advice from a Professional Athlete and Fitness Instructor who also has Fibromyalgia

  • There are specific ways that people with fibromyalgia should approach exercise that may look a little different than the general population, but even the general population could benefit from a slightly more finessed entry into fitness.
  • If you are starting a fitness program and have chronic pain, make sure that you know how to help your body recover from whatever exercise you do, and take baby steps all along the way.
  • We may have to retrain our brain’s response to pain in order to progress. How to know the difference between productive pain and pain that means stop.
  • Be cautious of stretching because stretching can actually cause us to flare more than strengthening or mobilizing.
  • The process of getting stronger and building athleticism or building cardiovascular health is not linear.
  • The biggest gift of having fibromyalgia, if we can see it that way, is the hypersensitivity and the increased body awareness that we get to have.

We are told that exercise is good for fibromyalgia, but then we go out and do it, and we feel terrible. Megan was a dancer and competitive athlete until she was diagnosed with fibromyalgia. In her 20s, she felt like she lived in a body that was 85 years old. Over the last ten years, she has learned to listen to her body and retrain herself into competitive condition. Her advice can help you ease into a routine that is right for you and your body, no matter how big or small your fitness goals might be.

Disclaimer

While Megan is a trained fitness instructor and has all the certifications to tell you what to do with your body, please know that this podcast episode is designed to give you general information only, and this information should not be considered medical advice nor should it replace consulting directly with your doctor.

About Megan Densmore

Megan went from debilitating fibromyalgia symptoms to being able to realize lifelong dreams of competitive athletics, and along the way she has become an advocate for chronic pain and invisible illness. She is a working actress and indie film producer, she is an experienced Pilates instructor, and she is a proud distributor of Shaklee products. She is excited to speak out about the freedom she now experiences in all avenues of her life, and she is committed to teaching others to find their own freedom.

Links & Resources

Note: This episode’s show notes and transcript contain affiliate links. If you click through and make a purchase, we will likely receive a small commission. Read about what we do and don’t promote here.

  • Get free copies of Tami’s books at FibromyalgiaPodcast.com/book
  • Tami will be teaching LIVE, one class each month, for the entire year 2020. This is the same information that she teaches her Coaches, clients, and students. These classes will not be recorded, so we hope you can join us LIVE. Go to FibroWorkshop.com to find out what Tami is teaching on next.
  • Get Megan’s free e-book! Learn more about the “Zero to Hero” program and other ways to connect with Megan at MeganDensmore.com (affiliate link).
  • Learn about Invisible: The Film at Invisible-Film.com.
  • Fundraiser for Invisible: The Film in Los Angeles on Saturday, January 25th. Contact Megan through her website for details.
  • The symptom log mentioned in this episode can help you understand what is happening in your body and whether the things you are doing are helping or hurting. Access this tracking tool and all of our bonus materials using this link.
  • Tami has designed a special Fibromyalgia Exercise Tips handout that will outline some of the things to keep in mind if you want to begin exercising with fibromyalgia. Sign up to access the Tips sheet and all our bonus materials using this link.
  • Your warm-up is critical in preventing injury. Consider this warm-up routine that was designed by Dr. Ginevra Liptan (Episode 5, Episode 18). This is something that she uses with her patients at The Frida Center for Fibromyalgia.
  • Below you will find both a full transcript and video of the episode, with the studies mentioned in the show linked in the transcription.
Play Video

Transcript

You are listening to the Fibromyalgia Podcast with Tami Stackelhouse, Episode 28.

[00:50] Welcome to the Fibromyalgia Podcast! I’m your Coach, Tami Stackelhouse. 

In today’s episode, we are going to be talking about exercise. I know that’s kind of a four letter word, but we’re going to be talking about exercise and doing that in a fibromyalgia body. We’ll be talking with a professional athlete who also has fibromyalgia about ways that you can properly exercise in the body that you have right now.

[01:21] Before we dive into today’s episode though, I have a quick announcement and this week’s listener shout out. This listener is @AvysMom, and this was posted on iTunes.

[01:34] She says, “Healing hope arrived with this podcast. Fibromyalgia information, which I had been searching for years, showed up in my life with this podcast. If you’re diagnosed with fibromyalgia or love someone with fibromyalgia, the abundant and compassionate plethora of knowledge has helped me finally become an advocate for myself.”

[02:00] Thank you so much for sharing this on iTunes! I love that you’ve been able to become an advocate for yourself. I think the most important thing that I want all of you to get out of the Fibromyalgia Podcast is that empowerment that you have, the tools that you need, and the knowledge that you need to be able to live the life that you want to live, to be able to advocate for yourself, with your doctors, with your friends and family, and also the tools to be able to take care of yourself in a way that lets you live the life you want to live, in spite of your fibromyalgia.

[02:43] Which leads me to my special announcement today. I mentioned this on our last episode, but I want to keep reminding you guys. This year, in 2020, I am going to be teaching a very special series of classes. As I mentioned in our last episode, this is all of the same information that I teach our Certified Fibromyalgia Advocates, Coaches and Advisors. This information is the information that helped me to get from where I was filing for disability to where I am today, which is pretty much no pain, and my doctor actually telling me my fibromyalgia is in remission.

[03:27] Now, that information is the thing that’s going to make the difference for you. Not just getting the information, but implementing the information. What I’ve decided to do for this year is: once a month, I am going to be teaching a free class that you can come to. It is literally the same information that I teach my Coaches, my clients, and my students. This information you can learn and implement into your own life.

[03:57] While I am teaching you all the same information, of course you don’t get the homework or the tests or the final exam. There’s no certification. This is kind of like you being able to audit the course for free.

[04:11] If you are interested in signing up to attend the classes, if you are interested in seeing the schedule or what’s up next, go to FibroWorkshop.com, and you will be able to sign up and be notified as each monthly class is scheduled.

[04:31] This month, in January, was all about goal-setting, doing my Gentle Goal-Setting Workshop that I have done lots of places. You can, depending on when you’re hearing this episode, that may have already happened, but if not, by all means, register for that. You will find all the details at FibroWorkshop.com. If you’re listening to this after the fact, there will be a class every single month for 2020. Go ahead and just go to that link, and you’ll see whatever is current for when you’re hearing this episode.

[05:12] I hope that you’ll join us. I will be teaching these classes live, so that does mean that you will be able to interact with me directly, of course, depending on how many people we end up having come. I do encourage you to log on as early as you can for the class.

[05:34] To protect people’s privacy and their own medical information, asking questions and things like that, we will close the classes five minutes after they start, and locking that room, so that we can have that privacy. We also will not have recordings available to just anyone for the same reason, so that the people who are there and who are listening have the freedom to be honest if they have questions. If you’re interested in attending, just go to FibroWorkshop.com. You can sign up, and you can see the schedule. Just remember you want to get there right on time, because we do close the doors at five minutes after.

[06:17] All right, now let us go into our episode for today. 

I have invited Megan Densmore to come talk to us as a professional athlete, as a fitness instructor, as a person with fibromyalgia. Megan was diagnosed with fibromyalgia in her early teens. She talks about that in this episode. Right after she was diagnosed, she went into a long period of denial, and eventually her fibro symptoms got bad enough that she just couldn’t ignore it any longer. She had to find some answers, some treatment. After working through all of that, she has now been in remission. Her fibromyalgia has been in remission, she says, for probably about 10 years now.

[07:12] She has finally been able to realize her dreams of becoming a competitive athlete. She is currently a competitive weightlifter. Yes, with fibromyalgia. Yes, weight lifter. I will repeat that, because I find that very impressive, and she helps other fibromyalgia patients go from “Zero to Hero”. We’ll talk about that in the episode.

[07:41] Megan is also a working actress. It was super fun — I watch the show New Amsterdam, and it was super fun to see her face on there in an episode. She is a working actress. She’s also an indie film producer. She’s an experienced Pilates instructor. Being somebody who lives with fibromyalgia, she’s just naturally become an advocate for chronic pain and invisible illness.

[08:09] I met Megan in early 2015. She reached out to me because she was thinking about putting together this film about fibromyalgia. Here we are, five years later, and that film is nearing the finish line. It is called Invisible. Megan is the producer of this film.

[08:35] Stay through to the end of my interview with Megan. There is some information she gives about the film at the end. I’ve been behind the scenes on parts of that. I’m interviewed for the film and a few other things, and I can tell you it’s really going to be something special. They are really showing a full spectrum of what it means to have fibromyalgia, everything from the really, really sick and debilitated all the way to people like Megan and myself who find ourselves in remission and able to live with no pain.

[09:14] Now, I do want to just remind everybody that while Megan is a trained fitness instructor and has all the certifications to tell you what to do with your body, please know that this podcast episode is designed to give you general information only, and this information should not be considered medical advice nor should it replace consulting directly with your doctor or with someone like Megan.

[09:44] If you’re interested in scheduling a consultation with Megan, she can be reached at her website, which is MeganDensmore.com (affiliate link). We will have that link in our show notes.

[09:55] Of course, you can always schedule a consultation with a Certified Fibromyalgia Coach. You will also find that in today’s show notes, just go to FibromyalgiaPodcast.com/28 for Episode 28, and you will find all of these links in the resources on today’s episode.

[10:18] Before we dive into our interview with Megan, there is a little bit of additional information I want to give you that relates to a few of the things that Megan and I talk about in her interview.

[10:33] One of the things that she talks about is how she was diagnosed by Dr. St. Amand. She talks about how she was a little bit older than the typical age for someone that that particular protocol works really well for. If you want more information on that, you will actually find that in Episode 16, where I interview Dr Melissa Congdon, who is a fibromyalgia specialist who was trained by Dr. Paul St. Amand. There’s some information in there, and a little bit more on what Megan was talking about with being diagnosed as a teen.

[11:14] Another thing we talk about in the episode is learning how to track your symptoms, so that you know whether the things you are doing are helping or hurting. We do have a symptom log that you can download. [Sign up to access all of our bonus materials using this link.] It’s the same one I use with my clients and my students and my Coaches. You will find that in today’s show notes. It’s FibromyalgiaPodcast.com/28, and you’ll see the link where you can grab that symptom log. I encourage everyone to start tracking their symptoms, because it’s really hard to know what’s happening in your body without that more concrete number to look at.

[11:59] In my interview with Megan, I talk about a client that I’ve been working with, and being able to track her symptoms over time, it becomes more clear that we’re improving. It was a very subtle shift for her. It was something that went like mostly sevens every day with just a few sixes thrown in, changing over to mostly sixes with a few sevens thrown in. If we hadn’t actually been writing down and tracking those symptoms, it would have been harder to know — Are we making progress? By using that, we are able to do that.

[12:37] One of the other things that we use when we are working with clients that I unfortunately don’t have as a download for you, because it’s a tool that we only use with our clients, is the Fibromyalgia Impact Questionnaire. That is also a great way… It’s what doctors and researchers use in the fibro studies. We use that with our clients as well to really see the impact that fibromyalgia is having on your life, and really be able to see the change over time and your improvement.

[13:09] The other thing that I have for you that will be special for this episode… Go to FibromyalgiaPodcast.com/28 and you will see there will be a very special handout that will outline some of the things to keep in mind if you want to begin exercising with fibromyalgia. [Sign up to access all of our bonus materials using this link.] We will also have a link to Megan’s website and resources. She has an email list. You can sign up for that. She’’ll send you a couple of sample exercises. She’s got a free e-book you can download. We will also have this little information sheet that I will give you. It’s sort of a cheat sheet for the things to remember when you are moving your body and you have fibromyalgia.

[14:00] The last thing that I want to mention that we will also have out in the show notes, is a warm-up routine that was designed by Dr. Ginevra Liptan. This is something she talks about in her books, The Fibro Manual and Figuring Out Fibromyalgia (affiliate links). It’s something that she uses with her patients at The Frida Center for Fibromyalgia. It is a really great place to start.

[14:25] If you listen to my conversation with Megan, one of the things we talk about is the fact that her warm-up is what gives her the “right” to be able to lift weights. Warming up is super, super important, and if you want to try just a free resource, Dr. Liptan has a great video that you can watch on her YouTube channel that walks you through how to do a warm-up with fibromyalgia. A lot of my clients, honestly, I start them off with this warm-up, not even doing the whole warm-up but gradually working up to it. Once they can kind of know how to get their body moving, then they can go on to other types of exercise.

[15:12] Megan also has her program, which we will talk about, called Zero to Hero (affiliate link). We’ll have all of that information for you as well.

[15:21] With that, I am going to let you listen to my conversation with Megan Densmore, and I hope you will be back here in a couple of weeks to join us. It will be our Valentine’s Day Episode. It will release on February the 4th, and I’m working on something special for that. It’s still in the works, so stay tuned. It will have to do with love of course, because it’s Valentine’s Day.

[15:50] Then, our next episode after that, Episode 30, is going to be our next Ask the Coach. There is still time for you to send in, if you have any thoughts or questions on what that Ask the Coach should be. I have a lot of really great ideas, and I’m kind of waiting to see which one gets the most votes. That will be coming up in just a couple of episodes. Enjoy my interview with Megan!


[16:19]
TS — 
Hey Megan, welcome. I’m so glad you were able to chat with me today.

[16:24] MD — Hey, this is my pleasure. It’s always nice to talk to you.

[16:27] TS — Awesome. What I thought we would do today is… First off to start a little bit with your story. Everybody is always told, you know, exercise is good for fibromyalgia, but then we go out, and we do it, and we feel terrible. I would love to talk to someone like you, a professional athlete. It has been part of your whole life, but also with fibromyalgia.

[16:52] TS — Let’s just start there. When were you diagnosed?

[16:57] MD — I was diagnosed… I always say 13. It was around 13, give or take a year, something like that. I’m now 35, almost 36, actually. January I’ll be 36. I’ve been living with fibro for about 20 years, a little more than 20 years.

[17:17] It’s funny, because if you go to my social media —  I’m most active on Instagram — if you go to my Instagram profile and you just scroll and look at me, you probably wouldn’t have any idea that I have fibromyalgia, because the content that I’m promoting is not necessarily what you would see on a profile of someone who, where [fibro]’s a big part of their life. You’ll see me lifting weights. I compete in Olympic weightlifting, which is the style of weightlifting that you see on the Olympics.

Megan Densmore

[17:48]  That does not mean I have gone or will ever go to the Olympics. I compete in the masters division, which is the over 35 group. We have a lot of fun at masters nationals, where if you show up on the first day, you might see someone who’s 80 years old lifting on a platform.

[18:07]  TS — Are you serious? Oh my goodness!

[18:10]  MD — I’m serious. The way masters nationals works is the first day is the oldest and lightest. I believe last year there was like a, you know, 120 pound, like 73 year-old woman, just doing her lifts, nailing it. That’s great.

[18:25]  TS — That’s amazing. That’s awesome.

[18:29] MD — You’ll see my profile… I’m also a working actress. I’m a producer. We’ll talk a little bit about that. I’ve actually worked in the fitness industry for 13 years now. I post about fibromyalgia. I share about it in a way that I think is helpful. I always find it’s important to mention that I may not look like someone that you think has fibromyalgia, even though it’s been a part of my entire life, starting in my teenage years. I was diagnosed really young. 

My story, in brief, is that I was an athlete and an actress. As a kid, I had a rapid decline. I was running track, and my track coach got concerned because I wasn’t really able to have my full kick when I ran around the curve of a 200 meter race. He was sort of like, “Well, what’s, why? Why isn’t your speed working? What’s happening?” I ended up very quickly in a rheumatologist’s office and got a confirmed diagnosis of fibromyalgia. They ruled everything else out really quickly. I’ve always been grateful for the fact that it was clear.

[19:43]  TS — You didn’t have what a lot of us have, where you’re like… “We don’t know what this is”, bouncing around from doctor to doctor? You got a diagnosis really quick?

[19:52] MD — I didn’t have that. I still don’t exactly know why or how. I do remember they did blood tests and ruled everything out. I was young, so I had a pediatrician, and my pediatrician, Dr. Murdock, who is still a lovely family friend, got me right to this rheumatologist, literally the second office that I was in. I remember that confirmed diagnosis, but what I also remember at the time was this well-meaning doctor, older gentleman… We were in his office, not in like an exam room. We were in his office with his degrees and the desk and all of that, me and I think both of my parents…

Which is funny, because my parents have been divorced since I was three. They’re good friends now. It’s really funny. They’re like besties, but just probably shouldn’t have been married, and that’s fine. They agree with me.

[20:53] TS — That happens sometimes, right?

MD — Like, you just shouldn’t have been married, but like, you’re both great and you made cool kids, so like, it’s fine.

I think they were both there, and he just was so sure and confirmed with this diagnosis. Then he immediately shifted to, “You’re going to have this for the rest of your life. There’s no cure.” You know, kind of, “Forget about continuing being an athlete”, you know, “Forget about these kinds of things”, and like, “Here’s some drugs.”

[21:22] TS — How did you feel? Did that just break your heart?

MD — Oh yeah, but…

TS — But you’re also stubborn. I know!

MD — Yes. Immediately, I was like, “NO, though. Like, NO, that’s not… You don’t choose that for me.” At the time I was sort of like, “I’m not that sick”. Like, “I’ll figure this out.” Then began the denial that continued until I was about 21.

I didn’t really do any treatment at all until my early twenties, and I had a pretty bad decline when I was in college. That’s my diagnosis story. 

My getting better story started around 15 years ago, which was not long after. I mean, it was all kind of pretty quick. Like, diagnosis at 13, decline at 21.

[22:14] Twenty-one, I ended up in Dr. St. Amand’s office. Some of you may know who he is. For some reason, when he diagnosed me I was like, “Okay, I guess I actually have this.” Which is funny, in itself. I tried his treatment protocol for a bit. It didn’t really work for me. I was just above the age bracket where it’s not maybe as effective as it is for a younger crowd.

Then, at that point, I just really made the decision that I was going to figure out how to get better. That was, I think I was maybe 23. Then, I was asymptomatic, completely in remission, 10 years ago, like a year or two later, like 25-ish.

[23:10] I’ve been in remission for 10 years, and I use that word. Yes, I like that word, actually. I don’t experience symptoms on a daily basis, but that doesn’t mean, and we’ll talk more about the exercise thing as we go, but that doesn’t mean that I don’t feel things. I’m able to discuss things in a different way, as a fitness expert who has had [fibromyalgia] and understands this.

That’s why you’re going to see me on social media and be like, does she have fibromyalgia? I would say, for all intents and purposes, I don’t really, but I do, but I don’t, because I don’t have to actually change my choices every day based upon that, and I would attribute exercise as one of the massive reasons why I don’t daily experience symptoms.

[24:04] TS — Absolutely. One of the things that I like about the word “remission” is — I feel exactly the same way as you. It’s like I still have this body that’s a little extra special, and I do still have to… Like if I go back to all of my old bad habits, I know I would go back to feeling the way I used to feel too. Like there’s a certain amount of, I don’t know… “protective” is the word that pops into my head. There’s a certain amount of protection I have to do for myself that maybe somebody else wouldn’t have to do, but I don’t have — like you — I don’t have pain on a regular basis. So, yeah.


[24:51]
TS — 
You were very active before your diagnosis. Did you stay active during that denial period?

MD — I did, and this was considered miraculous by most doctors, who then saw me [and] who wanted to have an opinion about it. If I look back, I could see that at that time, I created this very strange sort of workout regimen for myself, based upon things that made me feel better, with the knowledge that I had at the time. That was before any of the many, many certifications that I have now. If I look back, I basically took my body awareness and my, you know, having been a dancer, having been an athlete, knowing my way around a weight room, knowing my way around some yoga, some Pilates, some things like that, to be able to do… I had a routine that I did.

It’s funny, I’m getting like a flashback of the 24-hour fitness in Hollywood… I lived on Fountain and Vine, and it was right by the river, the ArcLight cinema. I would go in there, and I had a routine that I did, that I put together, and that must have at some point “landed” because I stubbornly then continued to have a similar way of looking at exercise for fibromyalgia.

Then, with a lot more education and tools to understand why I liked certain things, and why I didn’t like certain things, and why certain things helped, and why other things didn’t, and also why I have specific ways that I recommend people with fibromyalgia approach exercise and ease into it that may look a little different than “gen pop”, as we call it, general population, in the fitness industry. Super funny term.

TS — That is a really funny term.

MD — Even gen pop could benefit from a slightly more finessed entry into fitness than the fitness industry is generally talking about or recommending.


[27:08]
TS — 
Absolutely. Yeah, for sure. For sure. I wanted to ask… It sounds like the biggest thing that was the benefit for you, I mean you had all your knowledge and everything, but it sounds like you were really listening to your body and what your body was telling you.

MD — Yes, and if we go back to that 13 year-old who looked at my parents, who luckily… You know, I was from Oregon, where, I love to say, that it’s illegal to live in a yurt in the state of Oregon, because too many people wanted to do it. That’s actually a law.

TS — I didn’t know that about Oregon, and I lived there most of my life!

[27:46] MD — Too many people wanted to do it.

I looked at my parents and I just said, you know, it doesn’t feel… How did I know this at barely even a teenager? I couldn’t even drive a car yet. I look at them and I say, “You know, being on some sort of a painkiller for the rest of my life like seems like a bad idea, because then how am I going to know if I hurt myself? How am I going to have any sense of what my body needs or what’s going on?” I had no right to have that much perspective of body structure or mechanics at that age, with the knowledge that I had.

If we fast forward, even my philosophy when working with clients with chronic pain, which I’ve had clients with all different types of chronic pain… It may not be a systemic type or even something in the autoimmune family. It could just be that they just had knee surgery, and then that still shows up as chronic pain, ongoing, because you’ve created trauma in the knee. Even with those groups of people, I always recommend that they’re very aware of what medications they take. You know, what’s going to block a sensation, if they are going to get something like a cortisone shot. Why, and in what manner, and for what purpose? I never recommend a cortisone shot if they’re not also under the observation of some professional of some kind.

My roommate, who won’t mind me mentioning this, is dealing with a shoulder thing, and she’s being seen by a chiropractor and a physical therapist, both I greatly respect and trust. She had had a muscle that kept seizing, and she got a shot in the muscle to help keep it from spasming. Which, then, she’ll go back to her professionals, and it will help them do their job. Right?

[29:31] [However] if someone’s just going into an orthopedist, getting a shot, and then walking out the door with no guidance about what else is going on, that I don’t generally recommend. It’s a bandaid. If you’re going to get something like that because it’s going to help us actually move forward, if we need to strategically mask pain or get a muscle to relax in the short term, then yes.

The biggest gift of having fibromyalgia, if we can see it that way — which I know you and I are very much on the same page about — is the hypersensitivity and the increased body awareness that we get to have. Though that can feel like our worst enemy on a lot of days, because we may know that the pain we feel is actually more intense than what the actual damage could be in our bodies.


MD — I always have said, as well, that I’m grateful that what I have is fibromyalgia, because my joints are not deteriorating.

[30:33] TS — Yes, such a big distinction. You know, somebody who’s dealing with rheumatoid arthritis or something like that, there’s actual damage that’s happening. With fibromyalgia, we don’t have that damage. We just have faulty processing.

 

[30:49] MD — We feel like we have that damage, but we don’t have that damage. The cool thing for me over the years, and again, as my knowledge has increased in the fitness industry, is… It’s sort of like…

I remember the day when I talked to my knees and I was like, “You guys can do a deep squat, so let’s go do it. There’s no structural damage in here. I’ll warm you into it. We’ll get there. We’ll go one step at a time.”

I had to do all of those things, over years, before I was going to snatch a heavy barbell over my head. I couldn’t do that right away. There were a lot of things that had to come into play. Making sure my ankles were on board with the kind of flexion needed for that kind of depth, you know? It helps to always go back and say, “There is nothing structurally wrong in my joints. They can do this movement.” Then, enjoying the fact that, as they go through these movements, they generally feel better.

Now, I know that there are going to be people listening to this podcast who have fibromyalgia and, and, and, dot, dot, dot, dot, dot. Right? There may be people here who do have structural issues in joints. Maybe they were diagnosed with fibromyalgia after their knee replacement. Maybe the trauma of the knee replacement actually caused them to get this diagnosis. That’s not crazy. That’s a possible thing. In those cases, you still can do a lot more than you think you can. Respecting what those structural issues are, and understanding that the structural issues are limited. They are specific.

[32:28] TS — Right. It might be a bad knee or a bad shoulder, or a bad spot in your back or something like that.

MD — Yep, and that can always be worked around.

[32:38] TS — Right. Absolutely. I remember working with a client several years ago and having this conversation about retraining her response to pain. I mean, you know, pain is there for a reason, right? Like, it’s good. It tells us there’s something wrong. With fibromyalgia, sometimes we have pain when there isn’t something wrong, in terms of actual structural damage, or torn muscles or ligaments or whatever, and retraining her brain to say, “Okay, yes. This is pain, but this is fibro pain. This isn’t pain saying you should stop because there’s something wrong.”

[33:16] MD — Right, right. Well, and if we go into… Okay, so if we know that there’s going to be pain like that, and there may be pain in specific spots…
Like for me, it’s usually my left side, all the way up and down, my left
knee, my left ankle, my left SI joint, the front of my left hip, my
left side of my rib cage, up to my left shoulder, up to the left side of
my neck. Crazy, right? These are things that I just know are the case.

Now, sometimes I’ll have something on the other side. It’s usually my right ankle might have something to say. My right knee might have something to say, but generally it’s just my left side. I know that is coming from a rotation in my pelvis. Okay, cool. I know that I have some tight muscles around my shoulder, but I also know there’s no actual injury anywhere. I’ve done the tests. I’ve done the MRI’s. I’ve done the x-rays. I’ve done all of those things.

[34:20] MD — I’m going to have to, if I was starting at zero and I had this pain, first of all make sure that I know how to help my body recover from whatever it is that I do, and take baby steps along the way, so as not to overdo any of these things. Now, that does not mean that I won’t have pain when I exercise. I will, because these parts are uncomfortable. If I can be brave and learn what my boundaries are, grow my knowledge, and have some people in my corner, maybe somebody who’s doing body work on me, there are a lot of different options in that area. Maybe somebody doing acupuncture. Maybe a great physical therapist. Maybe a great trainer or a great Pilates instructor, or a great practitioner of some kind who is able to keep an eye and gauge these things.

 

[35:16] MD — I would never make my pain worse, and I would be able to start to see that my pain would actually get better as I moved. Now, I’m at the point where I’m the most uncomfortable on my rest days. I have two rest days a week that I do not lift, but I don’t really like it. Very often, I’ll still kind of do my warm-up, like what I would do for my weightlifting warm-up, on my rest days, or I do something. I do mobility. I take a long walk. I do something, because my body now is so used to getting movement and having movement make it feel better — which I believe is a thing with fibromyalgia — that I actually feel worse if I sit on the couch for too many hours.

[35:59] TS — Yes. I just had that conversation with a client. You know, “I feel bad if I’m sitting all day, but I also can’t move all day.” It’s like, let’s find the right balance. It’s not an either-or. It’s both.

Let’s talk a little bit about good pain and bad pain. I think for a lot of people listening, pain is pain, and it’s all kind of lumped together. How do I know if this is good or bad or….?

MD — Yeah, absolutely. There’s a lot of pain that I like to call “productive pain”. When I’m working with a client in person, or if I’m paying attention to my own body as I’m warming up or as I’m moving, I generally like to say my first question is, “Okay, you feel pain. Is it achy or is it sharp? Achy or sharp or stabbing or poking?” 

Generally, aching pain is a muscle that may have been too tight or seized or overworking, releasing. A good example of this would be if you lie on your stomach on the floor, and put your hands under your head… Just lie completely flat. If you pull your belly button to your spine, pull your abs in. Basically you might feel an ache in your lower back, because basically what you’re doing when you engage the front of your body is allowing the back of the body to let go and release a little bit.

That may or may not happen, depending on how tight somebody is, but that’s something that may occur for somebody.

[37:39] TS — Maybe the ache of… Like if you’re doing a stretch.

MD — Exactly. Like a mild stretch. Not like… When you think of a stretch, oftentimes a stretch will feel like a pull. I would actually recommend that anyone with fibromyalgia, if you’re stretching, be cautious of stretching because stretching can actually cause us to flare more than strengthening or mobilizing. Mobility work is different than stretching. I still hardly ever stretch. In fact, stretching scares me. Stretching is the only time that I’ve injured myself in the past 20 years of my life, probably. It has come from stretching or overstretching, so I’m still scared of it. I’ll admit it. I don’t like to do it. One hundred percent will admit. Scared.

Now, the pulling… Let’s say that you’re stretching your hamstring, and you feel the pull in the muscle. That may not actually be helpful. What you could look for though, would be like the milder ache of a gentler stretch that generally can be beneficial, but it can be very intense for someone — well, anyone, fibromyalgia or not.

[38:51] MD — There are also ways I generally recommend, that we know what productive pain is, which could be aching pain or even, like, feeling… I wish I could figure out if I can try to describe this… Another productive pan would be, like, I know…. I have tight muscles around the rotator cuff of my left shoulder, but I know that nothing is torn and there’s no damage there. Before I’m lifting, I will move my arm, the head of my humerus — basically my big upper arm bone — I will internally rotate it and externally rotate it. As I do that movement, it hurts because the muscles around my shoulder girdle are tight. Okay.

The muscles in my neck, sort of at the top of my shoulder and my neck — your traps — those are also tight on me. Here’s the cool thing: I’ll move my arm bones around, it’ll hurt a little bit, but it’s… It feels good. It’s the kind of pain that’s like, “Oh, something’s happening.” Then, I relax my arms. Then, maybe I would try to do a circle with my arm, and my shoulder will feel better after the mobilization of the joint than it did before. Therefore, productive pain.

Generally, those kinds of, like, “Okay, I’m moving a joint and it kind of feels good, but it kinda hurts” is productive. Aching is generally productive. We still get to choose how comfortable we are, and how far we go into either of those things.

[40:27] When it comes to anything sharp or stabbing or that kind of pain, I always just recommend stopping. Whatever you’re doing, stop and stay still, because often it’ll pass. That sharp pain is very often just a super quick, “Hey, be careful. Alert.” You know, “Warning. This isn’t good,” but that doesn’t mean it’s going to stay. If you do have something like a sharper stabbing pain for any persistent amount of time, yes, go to the doctor, because there may be a structural thing that’s now happened.

Generally — this is the cool thing — the type of pain that we’re experiencing with fibromyalgia is the communication pain. If we can start to learn and not be afraid of the productive part, it’s like opening this huge door up to a whole ‘nother universe of potential for what we can do. From there, once you start see like, “Okay, productive pain. Okay, that’s the warning sign pain”, then you have to get really familiar with how your body alerts you.

 

[41:45] MD — I always use this analogy. I think it is a good one. It’s like there’s a line drawn on the floor, and when you’re first exercising with fibromyalgia, you never want to cross the line. You’re going to start very slowly walking toward the line. The line is essentially the level of exertion that would cause you to flare. The reality of most people with fibromyalgia is I would say that that’s less than 15 minutes of continuous exercise.

[42:16] TS — Oh, definitely. Yeah, for sure.

[42:20] MD — Less than 15 minutes. Right. Let’s say that that yellow line for somebody is 20 minutes of activity. That could be 20 minutes of doing the dishes, 20 minutes of standing, 20 minutes of running errands, even including driving, 20 minutes of talking on the phone, 20 minutes of working on a computer, even if you’re sitting down. We could go and on and on and on and on and on and on and on about that, right? Let’s just say the yellow line that you don’t want to cross is at 20 minutes in the beginning.

Start with five minutes of anything and then slowly start to increase toward the line, and get familiar with your body as you’re there. Then, the cool part — the exciting part — is, then you’re going to strategically start to step over the line. What you’ll notice is, “Oh gosh, I’m okay. I stepped over the line. I stepped over my 20 minute line, and I didn’t have a flare.” Cool. Your line just moved to 25 minutes. We just have to kind of slowly gauge past it.

I would recommend this for literally anyone…

[43:29] TS — Absolutely, yeah.

MD — …considering how to build activity level. Even when you’re talking about what I do as a weightlifter… You don’t put, you know, 150 pounds on the bar on the first day. No. When you’re learning the technical lifts that I do, you start with just the bar. You might even start with a lighter bar. You might even start with a PVC pipe to learn movements.

TS — Right.

MD — You start with baby steps and build up.

MD — The biggest thing I would say to consider in this is: Don’t go with the fitness industry saying, “hour sessions with a trainer” or “60 minutes”. Uh uh.

[44:11] TS — Oh no. That’s a recipe for disaster for us, for sure.

MD — For most people, really, if they’re not prepared. 

Now, as someone in the fitness industry, who has been paid by the hour and has clients by the hour, I’ve had to have conversations… I remember one of my chronic fatigue clients at one point, she was paying me for an hour. It didn’t work in my schedule to have her come for less than that. I said to her in the beginning, “This is how this is going to go. We’re going to chat. We’re going to do this exercise. You’re going to rest. We’re going to chat again. I’m going to get to know you. I’m going to give you education about things you need to know about your body. We’re going to stop a lot, and we’re going to chat a lot, and we’re really only going to do about 20 minutes of movement in your session. Are you okay with that? Does that still have value for you?” She said yes. Then, slowly, over time, we got her to exercise for the full 55 minutes of the session. We didn’t do it right away. She wouldn’t have been able to do it right away. I would’ve been irresponsible as her trainer to do that from the beginning.

[45:21]  TS — I hope all of you who are listening, I hope this is landing for you. When I talk to clients about this, and I’m sure Megan would say the same thing, a lot of times we feel all or nothing. It’s like we were talking about, you know, doing a lot of activity during the day versus resting all day. We’ve got to find the middle. Don’t feel like you’re being a wuss if you can only do 5 or 10 minutes, that is actually normal.

MD — And we celebrate that! That’s the other big thing is, you know, think about how much you can accomplish. Five minutes of a walk every day, or five minutes of a walk, five days a week with two rest days. Okay. That’s great. I think that’s perfect, because then that builds up over time. Before you know it, I see this with so many of my clients who’ve done — I have an online workout program specifically for people with fibromyalgia, it’s called Zero to Hero (affiliate link) — and so many of these clients, they come back to me and they’re like, “I did extra. Is that okay?” Yes! How do you feel? What do you mean, is that okay? Like they broke a rule or something? It’s like, no, this is normal. You’re at this point where it’s transitioning, and you’re seeing that your body is capable of more.

[46:46] There’s a pleasant surprise about it, because the program is so strongly structured, to allow for this *over time* development. Then, they get about three-quarters of the way through and there’s, there’s a wall, there’s a big mountain, three-quarters of the way through that. Everybody hits it at the same time, where they’re sort of trying to get to where they’re exercising for about 45 minutes. There’s a big jump from I think 30 to 45 minutes and — cardio happens a little faster, but any kind of controlled movement that’s basically body weight training exercise — and they always come back to me. They say, “I can’t do all of those workouts.” And I say, “Okay, today. But you’re going to be with these programs for six weeks. Do you have to do that on day one, or would you be able to do it six weeks from now?” They’re like, “Oh, okay!”

We’re still going to see micro growth even further along. I still see it even now. I recently went from training four days a week to training five days a week. My coach wrote my program for five days a week, and it was a little too much. It wore me out a little too much, so all we did was we kept five days a week, because I like that. My workouts get to be a little bit shorter each day. Instead of four days a week, where they’re like two hours, if they’re five days a week, they’re like an hour and 15 minutes or so. I’m not extra exercising that whole time, by the way. I rest a lot.

[48:15] Weight lifters, we joke, like five reps is cardio. I’m sitting down for like a minute, and then I’ll stand up and do one thing, and then sit back down again. Don’t even think that I’m exercising for two hours straight. I’m not.

We realized that we needed to slowly reduce what we would call the training volume, which is just the total amount of output that I was doing in those five workouts. We brought it back a little bit, and now my body’s doing great, and we track that with recovery.

I’m always asking my clients, how do you feel the next day? How do you feel two days later? I can’t pretend to help someone avoid a flare. I can’t, because you’re going to have to cross that line at some point, strategically. What I can say is: How does your body feel a day later? How does it feel two days later? Let’s make sure that we’re making really, really smart decisions. You are the boss. You tell me if you think this is too much. We talk about it, we negotiate it, and we move forward.

I don’t think I’ve had any of my clients actually have a flare. I’m not sure I have. If I have, it’s probably been from some other factor.

[49:35] TS — Too many things, all conspiring at the same time, you know.

MD — I think, in fact that was it. Yes. I think one of my clients at some point had a death in the family and ended up in a flare. I think I remember that happening. Which of course, emotional stress, right? That’s the one that like, can we ever…? Like geez! Come on!

[49:55] TS — Right, right. You know, I’ve talked on this podcast a few times about the fact that you have to budget your energy like you budget money. You know, don’t start if you… if you are… Like the recovery, that tells us everything. Right? Because that tells us whether you’re going into debt, right? If we think about energy, like money, if you’re spending too much and going into debt, it takes you too long to recover, versus “Okay, I’m good the next day” or “I’m good in two days” or whatever it is.

MD — Yeah. Well, and a lot of my clients too, when we do our coaching calls in the program, they hear me make a lot of connections to athletes. Actually, I like to treat my fibro clients like they’re athletes, because we are. We’re just, it’s just a different way of looking at it. Athletes know that their recovery is not good if they have trouble sleeping and their appetite diminishes. You start to not be hungry, or you can’t sleep. Those are the two things that we always are trying to keep an eye on, because they immediately tell us that we’re over-training. Basically, with fibro, it’s a lot more complicated, but there are definitely things that I think relate, and what I would do is I would break it down into specifics.

[51:22] MD — Why is an overtrained athlete not having an appetite? They’re probably dizzy. Their digestion has probably slowed down. Maybe that’s because they haven’t been sleeping. They feel anxiety. They might feel stress. They might feel extra fatigue. These are all things that we feel. It’s not different. Their legs might be achy. They might have pain somewhere. They might be having trouble focusing. They might be having headaches.

You know, all of these things that we deal with [are] happening. It’s happening over there. The industry just doesn’t always break down and say, “Well, okay, why has your appetite diminished?” Your appetite has diminished because you feel nauseous. You feel nauseous because you have a headache and you feel dizzy. You have a headache and you feel dizzy because you didn’t sleep last night. You know, and on and on and on and on. What I’ll try to do is ask those more specific questions, or track our symptoms.

We are learning. If you’re listening to this podcast, I feel like I can assume that you are learning to track your symptoms on a daily basis. The more detailed you can be about the baseline of your symptoms, to notice if they’ve adjusted, that’s where the magic is. I can’t be inside of your body. You are the only person who can be inside of your body. You can say, “Gosh, my fibro fog is worse today.” Okay, what did you do or eat yesterday? What was your activity level yesterday? Maybe that fibro fog is not attached, but we don’t know. Let’s change what we can and what we know, right? That’s all we can do.


MD — Then, we experiment with that line, and it’s art, not science, right? We can’t always tell what the exact cause and effect is. We’re not able to do that. It’s too complicated. What we can say is: I have more energy today. What did I do yesterday? I feel slightly more fatigued today. What did I do yesterday? And tweak and tweak and tweak and tweak.

[53:45] TS — It’s also important to track trends, and to track long enough. I had a client that I just did this with. When she and I started working together, she started tracking her pain and her fatigue every day. Now after about five months, we’re looking at the difference from where she started and now — and on paper, unless you actually do the math on what the number is, it doesn’t look that much different. She went from, like, 6.9 to like a 6.3. The difference is that’s mostly sevens with a few sixes, to mostly sixes with a couple of sevens. Which, experientially, is a big change for us. Five months ago, if you weren’t tracking that, to go back and say, “Hmm, how, how was I doing five months ago?” It’s just impossible.

MD — Well, and also, fibromyalgia or not, our bodies are going to go through seasons that they like better and will get stronger. The process of getting stronger and building athleticism or building cardiovascular health is not linear. It is not a straight line, and you cannot assume that it is for anybody. It’s not. It has always helped me as well with my clients as they’re tracking things is… I remember one of my clients got to a point where she was doing really, really, really well. She was, I think, maybe three months from the end of the program, and the program is a year long. You gotta hang out with me for a really long time. We get to know each other pretty well.

MD — I think she was about to the last three months, and the last three months were winter, and she lives in the Midwest. Dramatic weather shift. Basically, think of the weather in Chicago. That’s not where she is, but, you know, ish. She had gotten to the point where she had hired a trainer, and she was working with a trainer doing weight training as well. She was an IRONMAN athlete who actually got hit with fibro pretty dramatically. It can happen to anybody. She had started to ease back into her training, but the weather change meant that she wasn’t biking outside. There were a couple of really key shifts that had happened. We tracked all of the details and I said to her, “Can you see the big thing that’s glaring? That’s different right now?” And she couldn’t. I said, “It’s winter.” She said, “Oh!”

[56:18] TS — Yeah.

MD — Then, we thought about, okay, how do we shift for that? What does that look like for you? What are all the pieces of navigating winter? What was really neat was then she could say, “Okay, it’s winter. My body is still stronger. I still feel better. I have this new, you know, wrench in the chain that I have to now figure out how to navigate.” That could be anything. That could be a job change, or maybe a move to a different apartment, or being in school, or kids being out of school. That actually happened to that same client as well. She had her kids came home from college and she was like, “Oh my goodness.” I said, “Okay, this is different!”

[57:11] TS — Yeah, and it takes the… I don’t know… It takes “it” off of us, right? It’s like, No, you don’t suck. It’s not your fault. This is just life. This is also why Megan’s program is a year long, and why a lot of the programs that I do with my clients are a year long, because we might do eight weeks together, and that gets you a start, but then six months from now your kids are out of school or it’s winter or whatever happens, and life is totally different now, and we’ve got to figure that out.

MD — Yeah. Yeah. We have to see ourselves through a full process. I even still know and respect… I did a weightlifting meet on Sunday. I was actually telling one of my current Zero to Hero (affiliate link) clients about this because I think it helped her. I was there, warming up for the meet. Everything hurt. Everything hurt, and my legs felt so tired in every warm-up lift, and I’m over there thinking, What’s going on? I sort of decided, because I know my body well enough to know that that chit chat and chatter of my body just trying to tell me what’s going on, is actually not an accurate test of what my body is capable of that day. It’s taken me a long time to get to that point, to know that is actually true, and to think about all of the training that I put in prior to that.

Then, I thought, “Oh, it’s winter. My joints are dealing with the fact that it’s winter, and it’s kind of cold in this gym, and I haven’t warmed up yet. My muscles feel cold, and my joints feel cold.” Sure enough, about 20 minutes into my warm-up, my body warmed up, and the pain was gone. It also told me that I needed to do a little bit of extra mobilization to make sure that the joints on the left side of my body were okay with what was coming next. I did that work to be responsible, knowing what was coming, and I didn’t let it scare me, and everything went fine. My body was great.

Again, here’s the cool thing: Having this experience is exactly the same as every other athlete that was in that gym at that time. The special difference is that I get to be so in tune with my body, that I get to make a whole bunch of really, really good choices that helped me not get injured.

[59:37] TS — Yeah. You know, there’s one thing that you said a long time ago that I’ve never forgotten, and that I love so much, is that you doing your warm-up is what — Oh gosh, what was the word you used? Not gave you “permission” — It’s, it gives you the “right,” that’s what it was. It gives you the right to be able to lift weights.

I would love to have you talk about that because we think that exercise is the *thing*, but it’s not just the lifting the weights or climbing, just doing the StairMaster, you know, whatever it is. It’s moving your body.

MD — Oh yeah. I would say, even so, my warm-up or what I’ve learned to do has morphed and changed and grown over the past 13 years, as my education has changed and my creativity has changed. Every aspect of what it is… I mean, it depends. If it’s summertime and my body feels really great, it might be eight minutes, ten minutes. Today, it’s cold. I haven’t gotten to see my chiropractor. I’m gonna go into see my chiropractor tomorrow, who’s a dream, who basically fixed my shoulder. That has been an issue for a long time.

That was a funny story in itself because I said, “I’m going to get really vulnerable here. I don’t know if you can fix this, but you’re kind of amazing. Do you want to try?” He’s like, “Yeah, I want to,” and he did.

It was great, but my shoulder’s kind of mad, because I had a meet on Sunday, and it’s cold in the gym, and I haven’t seen him in a bit because I’m doing so well. My warm-up was 25 minutes long today. I literally did every single thing that I know would be helpful before I even touched a weight, and I didn’t even have that heavy of a workout.

Today I’m on a week, it’s called a “deload”, which basically just means it’s lighter because I just had a meet. We’ve also learned — my coach and I have learned — that I do really well with a hard week, a slightly harder week, scale way back for a week, pull it back, and then hardest week of the program. My coach is really lovely, in that I got to say to him, “You know, this is how things have to go with me.” I have no idea if he programs other people that way. It’s a pretty good way to periodize what you’re doing. For me, that’s really necessary. I have to have that back-off week before I can move forward. I have to give my body a little bit of a break before I ask it to do more than it did before.

That warm-up today… I had a good workout, and I have no pain now. I actually have less pain. Yeah. I one hundred percent have less pain in my body now than I had when I had my warm-up for my workout around 11:30 am this morning, and it’s 6:00 pm my time now. I feel better. That should be something that I would love people to wrap their brain around, is that if your joints need to shift around a little bit, if you need to mobilize something, if something needs a little bit of attention, thinking about whether or not it would be interesting for you to be educated on basic biomechanics, like: this is how a joint works.

[01:02:57] MD — If you feel pain here, that’s because your joint is not doing the right thing. My left shoulder, I talked about it before, my left arm does not like to internally rotate. It really likes to externally rotate. It doesn’t like to internally rotate. I have to work on internal rotation of my left arm. When I do that, my shoulder feels good. These are things you can actually learn, though. That may sound really complicated here. It’s not. There are very simple movements that do that…

People with fibromyalgia, like ourselves, if we can… I never want to hold secrets. I’ve learned everything I’ve learned by getting educated and doing all the certifications and paying all of that money, so you guys don’t have to. I will tell you what I know, because you should know it too. If you know, then the power goes back into your hands to make good choices. One of my friends actually posted something funny on Instagram today, and she says, “It may be bad for business, but I would like you to not come back to me, because you have learned how to take care of yourself.” That is where I am, and I know you’re in the same place.

[01:04:20] TS — Yes. If people listen to this podcast and don’t need to hire me as a coach, Yay! At the same time — this is also true for Megan and myself — if you’re listening to this podcast and you’re like, “I don’t want to go get all the certifications. I just want somebody to hold my hand and tell me what I need to do, right now, today, to feel better.” You can also do that. We would be happy to help you.

Megan, I know you mentioned real briefly Zero to Hero (affiliate link), and I did tell people that we were going to get some practical do’s and don’ts in here. Why don’t you tell us a few of the principles that Zero to Hero is designed around, and how people can get some more information on that.

MD — Absolutely. The main principles that we’re talking about is… Well, you’re in charge, first of all, and it’s education. This is not a fitness program in the standard way that we would think about it. This is not just me throwing some workouts at you and saying do them. That’s not what this is. This is a year of getting curious about what you feel in your body, learning about your body, tracking your recovery, being patient with your body, learning how having fibromyalgia is a gift, and slowly starting to reduce your fear as you get empowered and as you move.

Yes, there is actual science behind why we’re doing what we’re doing, and when we’re doing it, in specific ways, and how that all goes, but the whole point is to get to know yourself and learn, about exercise and about yourself, over a year. Then, you get to keep the program after that year and revisit at any point.

Because again, life is life. If I have someone go through a year with me, and then they have some trauma or something, and they go back to a flare, you can restart the program on your own again. You could restart as many times as you want, because we are going to fall off the wagon. That’s a given. It’s not about how many times you fall off. It’s how many times you get back on.

TS — Yup. Yup.

MD — I think those are the main concepts.

[01:06:43] TS — I know that one of the things you mentioned, before we started the official recording, was that there’s a component to Zero to Hero (affiliate link) that is different than people think it is. You want to talk about that?

MD — Yes, I can. Yes. For the entire 12 months of the program, you get 30-minute coaching calls with me once a month. I put those calls in thinking, “Oh, we’re going to talk about specific exercises. They’re going to need modifications.” That’s not what happens. That’s not what happened. No. Not at all.

What we ended up doing on these calls is, it’s mostly philosophy or inspiration. It’s a lot more of this education side. It’s a lot more tracking of details. It might be something like, “I feel like I want to take a bar class. Is that crazy?” No, that’s not crazy. Here are the things that you should consider when you take it. Don’t be afraid. Go in with your eyes open, but understand your body might get tweaked, and let me know how it goes, and we’ll talk about it. It might be something like that. 

It’s usually more philosophical. They’re getting to know my beliefs about exercise. I’m often acknowledging them for things that they didn’t even see were really cool, that they did things like maybe taking a really long walk, or being able to go see nephew’s whole day of a soccer tournament and realizing at the end that they weren’t tired. You know, things like that.

I can draw on a lot of different things in those calls. Sometimes, I’ve talked about how to approach support from family in making time for the exercise, or feeling respected for the diagnosis, or navigating the emotional sides of that, which seems unrelated, but making the time for the exercise is extremely important. That’s not happening? What needs to change in order for that to happen? Maybe schedule it differently?

[01:08:54] TS — Mmhmm. Right. Because sometimes the reason we’re not doing things has nothing to do with willpower. You know, our last episode was on setting goals and habits, and that’s all of what I talked about. Setting up your life in such a way that doing it is actually easier than not doing it, for instance. Talking about, “Well, okay, so you didn’t do what you thought you wanted to do. Why? Let’s talk about that.”

MD — Very, very rarely is it an exercise, although sometimes it is. It’ll be like, “Hey, this exercise is making this happen in my neck.” Then, we talk about it, and I explain what may be going on. I’m also a nutritionist, and I know a whole lot about supplements, so sometimes people have needed that. If you’ve already spent the money to spend time with me, I’m absolutely happy to talk about, What did you eat? What’s maybe tweaking your digestive tract?

I have done a little bit more, it’s a little more focused. It’s almost like, Okay, you’re exercising now. How would an athlete change their food intake, timing-wise, maybe around their workouts? Are you eating before you work out? Are you eating after? What’s the window of time? You know, those kinds of things might be what we would talk about, as far as strategy. Maybe that would be what we’re talking about.

It might be tracking your energy over the course of the day. It might be something we’re talking about, to try to identify, Are you somebody who likes to exercise in the morning, or the afternoon, or the evening, and why? Right? It’s starting to look at all of these different factors that could either make it easier for you to stick to the program, or harder for you to stick to it. It could be even like, “I’m feel like I’m failing at this. I’m not doing it at all,” or life has happened, or there’s an emergency or something, and I’ll be there for that. It is coaching, and you know, it’s funny because this is not any different than what I do with my clients in person. This is what it is to be a personal trainer. You know, that kind of person, in person.

[01:11:07] TS — The cool thing about you is you know what it’s like living in a fibro body, and so you know the difference between “I just didn’t feel like it” and “My body is fighting me a little bit on this”. Right?

MD — Yeah. Sometimes, those are the conversations where, again, I know it’s funny, the kinds of specific questions that I can ask. It’s like, “Okay, does your neck feel like this?” Then I describe it, and they’re like, “Yeah! Like how? Like we’re on a phone call. Like what? How did you possibly…?” Then, I can explain, “Okay this is happening here or there, and say for the next three weeks, don’t lift your head on this exercise. Keep your head down, then do this extra thing. Do you remember this exercise that does this? Do that, and feel this, and then come back to it after our next call.” Then, they can often do it.

I may not even need to… I always offer… You can send me a video, I’ll watch a video. Almost nobody ever has to, because I say, “I think this is happening. Make this adjustment. See if it fixes it”, and it usually does. Then they’re able to kind of move past whatever it is.

Another fun thing that can often happen is, they’re often trying to do other types of exercise. Maybe they have a yoga class they like to take, or they want to work with a practitioner in their area, which I always recommend. Once we’ve gotten you to 30 minutes of consistent exercise, or to 45, if there’s a class you want to try, if there’s somebody you want to work with in your area… Again, this is not about staying with me forever. It’s having me for a year, and then moving on to the kind of movement that would bring you joy. I want you to do the kind of exercise that will… I always say this, the best kind of exercise for you is the kind that you will do.

 

[01:12:55] TS — Yes.

MD — Period. That’s just it. It’s the kind that you like and you will do on a regular, daily basis. That looks different for everybody. I love — that’s my favorite part. We get to the point like, Okay, you’re going to go to this class. Here’s what you need to watch out for. Here’s what you say to your teacher. Here’s what you look for in what you feel in your body, and what happens after, and then this is what you’re looking for the day after and two days after. Because if we look for recovery, oftentimes what we feel two days, after 48 hours, is actually more informative than the day after. Right?

Those are my favorite things. Because then people are starting to kind of feel brave, and courageous, and taking these risks. They’re scared, but then they always come back, and they’re like, “I said all these things, and my trainer said, ‘Wow, you’re so smart and you know your body so well.'” Basically, we’re setting the practitioner up for success, because it’s not their fault. If they make the wrong choice for you, they don’t know you. They’re just meeting you. They make a mistake. They’re human. That doesn’t mean they’re bad at what they do.

Although I will say, “Watch out for these five things. If they do these five things, they maybe aren’t somebody you should give your money to.”

[01:14:16] TS — Right. Exactly. Exactly. You know, the more we know, the more empowered we are, the better choices we can make, and the more we can like… All of life, right? That’s the thing that I have found with fibromyalgia, is the more I educate myself, the more I know my body, the more I know, “Okay, if I do this, this will happen. Here’s how I recover.” Really understanding all of that, life is unlimited. Because I’ve got the tools to be able to handle anything that comes my way. That’s what we want for you guys too.

 

MD — Absolutely.

[01:14:53] TS — How do people get more information? Connect with you? Find Zero to Hero?

MD — My website is MeganDensmore.com, which we’ll link in the show notes.

TS — Yup. Yup. We will have that in the show notes.

MD — There, you can easily find Zero to Hero. There’s a way to actually click and add your name to an email list. It’s a drip. You’ll get a few emails. In those emails are going to be three exercises, basically a sample workout that you can try. It’s not a salesy drip. What you’re going to see in those emails is: Do you want to talk to me? We can get on the phone. Here’s some more info.

You’ll also get a free e-book that talks about my philosophy of exercising with fibro, and you’ll actually get direct contact with me if you reply to those emails. It’s my personal email address, and I reply.

The other way you can get in touch with me is Instagram. I’m on there a lot. I do look at my messages. One caveat is that I have over 10,000 followers, which means that you might drop into an “other” file in my messages. If it takes me a second to respond, I apologize. If you could say, I heard you on this podcast, then I will know immediately that you are the perfect person that I should be talking to.

[01:16:21] TS — Perfect. I love it. We will have links to all of Megan’s stuff in the show notes. This is Episode 28, so it’s FibromyalgiaPodcast.com/28. You will find all of that.

The other thing I want to just talk about real quick, you guys may or may not know, Megan is also the producer of a documentary called Invisible: The Film. I would love to have you talk just a little bit about that, because I know you’re doing a final fundraising push so that we can get that out, so people can see it, and there are opportunities for people to help with that.

MD — Absolutely. Thank you. No one told me when I decided to start producing a documentary, a lot of years ago, that it would take so long.

TS — I know, right?

MD — We are in post production, and what that means is, like a bit of a holding pattern, to some degree. We are trying to make sure that, before we move forward with anything, we “picture lock”, it’s called. I’ll give some film lingo. It’s a story that really shares what we want to share about fibromyalgia. This project is really close to my heart. I actually appear in it as one of the stories. It’s important to me, because I don’t think that it needs to be the way that it is, when we’re navigating interpersonal relationships, when we’re navigating job applications, when we’re navigating boundaries, whether that’s personal or professional life, that we be misunderstood or disrespected in the ways that we are for fibromyalgia.

I mean, I still deal with this in the fitness industry. I am also a working actress, and right now I have a day job in the fitness industry, which I haven’t always had. I had a really cool opportunity that I couldn’t really say no to. Through that process, I’ve had to navigate the fact that even still, I can’t really stand for eight hours a day. I can’t have an active job like that. People might not understand the difference between, “Wait, you went and weight-lifted for a couple of hours. You can’t train ten clients in a day?” No, I can’t.

It has been my job in my personal life to explain why that is the way that it is, and create the boundaries that I need. Why do I have to work so hard at that? Why is this not legitimately understood? Why is it still considered this like hush, hush, embarrassing diagnosis, when it doesn’t have to be? I’m being a little bit vague on purpose, but the community listening can know that you can trust us in portraying this in the way that it needs to be portrayed, so that it can help us be more understood. We won’t say the movie is done until we feel like that’s exactly what we’ve done.

[01:19:28] TS — Yes. I can tell you guys, too, having been a little bit part of the behind the scenes, that these guys are doing it right. This is something that needs to be made to show people the truth of fibromyalgia.

You know, I remember being… I was diagnosed after being married\ six months, and I remember that being so hard in our new marriage. How one day I can do all these things, and the next day I’m like, “Could you get me a glass of water?” — “I don’t get it. You were fine yesterday.” You know? I mean, even as good as I’m doing now… I do all of these things, but it’s because my life is structured in a way that allows me to feel my best. If I were to go back to an office with fluorescent lights, working eight hours a day, at a desk with phones ringing… Like, Oh my God!

MD — Absolutely, and there are certain ways that we have to live our lives in order to maintain. I one hundred percent agree with that. For me, if I decided to start dating again… Maybe I will. You know this about me. I’ve been very stubbornly single for a long time. A part of that is because I have been able to structure my life really strategically in this way. Whoever I choose to be with is going to need to understand how important that is to me, and what the ramifications are for me if I get less sleep, or if I don’t eat the right thing, or if I don’t get enough downtime at home, you know, those kinds of things.

The other thing that I would add is, one of the reasons I think that we deal with some of this distrust or bias around fibromyalgia is because the illness can look so different from person to person. We have a lot in common person to person, but every single person I have dealt with with fibromyalgia is special and different. The spectrum that we have is very broad.

I’m even still in it, in my own way, and I’ve had a lot of people… I mean, you didn’t know this. I’ve had a lot of people come to me, upset that I share publicly that I have fibromyalgia, because they don’t want the world to look at me and see me, Megan, the athlete, the actress, like living in New York City, all of these things that I do, fitness professional, you know, appearingly stress free life. I’m at home a lot. I sit on my couch and watch TV a lot. I knit sweaters. I knit a lot of sweaters.

[01:22:17] TS — She does. You’ll see those on her Instagram too, I’m sure.

It’s the same conversation that everybody had when Lady Gaga said that she had fibromyalgia. There was a huge part of the fibromyalgia community that was mad about that, because they didn’t want people to look at her and say “That’s what fibromyalgia looks like.” The reality is, like…. Oh my gosh, there is so much that we do! I’m sure there are a ton of things that Lady Gaga does to make sure that she can have that life. That’s what this podcast is about, is giving you guys those tools, those pro tools, so that you can have that life.

Because there are a lot of complicating factors with fibromyalgia. If you just had fibromyalgia, there’s a lot of stuff I could probably promise you, but it usually comes with other things. Maybe you also have autoimmune, and maybe you also have some, you know, old injuries, or degenerative disc disease, or whatever it might be. Your range of how much better you can get is… Everybody’s going to be different.

Saying those things about Megan, saying those things about Lady Gaga, that is no different than somebody looking at you and saying, “Oh, you look like you’re fine. You must not really have fibromyalgia.” 

Sorry, I just stepped on that soapbox everybody. It just triggered something there for me, and that just drives me crazy. Because you guys would, I mean, you hate it when people say that to you. It’s no different with folks like Megan, like Lady Gaga, like me. We’ve done a lot of hard work to get here, and our job is to actually give you hope.

[01:24:11] MD — Yes. We really do, with the film, we do intend to show the spectrum, because we need to show the spectrum in order to help everything be accepted. Right? Because there’s a spectrum with any condition.

TS — Absolutely.

MD — Well, one of my very, very best friends has MS, and she has relapsed remitting, and you wouldn’t know she has MS. She doesn’t appear symptomatic of MS. Okay. I have another friend, who I met through her, who has, I think, primary progressive MS, and you can see it in how she walks, or has trouble walking and standing. Okay. Do either of them have MS any less than the other one? No, they don’t. They both do. We got some brain scans to show it. Right? It can be a spectrum, and we can accept that.

Maybe let’s — I feel a little soapboxy now too — but maybe we can start within the community, accepting the spectrum, and that will allow more space externally. That’s one of the big things we’re doing with the film.

We need to raise more money. We’re not asking the community to help us raise the money. I’m actually going to go out personally on my social media. I do have a pretty good following, and I’m going to ask the public to donate a little bit here and there, to see if we can get people who, maybe think I’m cool and didn’t realize I had fibromyalgia, to give us some support.

We’re also going to do a fundraiser in Los Angeles on Saturday, January 25th. I believe that’s the day that it is. Yes. We’ll make sure that you have some details about that in the show notes, because possibly some of you might be local and want to come, and that would be great, or support from afar. There are some options to do that. [Note: Contact Megan through her website for details on the fundraiser.]

We’re mostly looking for investors to help us get to the end, and strategic partnerships with other production companies, which is normal. It’s normal at this point to bring on external partners, to help get a film to the finish line. If somebody is listening who has donated or supported us in the past, know that this is normal for a film. It’s very normal for a film to get to the finish line like we are, and need to get what are called finishing funds. That’s essentially where we are. We’re excited to bring this forward, and to have done it right.

I shared with Tami before we started, and we were chatting before the podcast, that we had essentially a finished “picture lock” of the film in the summertime, in this year 2019, and it wasn’t right. We have gone back to the drawing board, because we really just want to make sure that the story we’re telling is going to aid the community and create positive change.

[01:27:00] TS — Which I love. I mean, it would have been much, much easier for you guys just to run with what you had.

MD — I won’t say we didn’t want to. We all want to be finished.

TS — Right, exactly. Not to mention like, every time I talk to you I’m like, “So how’s the film?” It’s like, “I just want to be done”, but you want to do it right, and I love that, which is one of the reasons why I have been supporting you guys all along, because I know it’s a story that needs to be told, and it needs to be told right, or it could actually damage our cause.

MD — We don’t want to do that.

TS — We will definitely have in the show notes where you guys can connect for the film. If you’re interested in following that, we’ll have all of that as well. The film itself has its own Facebook page. We’ll also have where, if you’re interested in that event or interested in donating — even if you guys don’t want to donate, one way you can absolutely help this is to share the information, because you never know who you might know or who somebody you know knows, right? Please, please share about the fundraising.

TS — When this episode comes out, it’ll just be a few days to the event, but do share about it, so that we can get this done.

MD — Yes, it’s going to happen.

TS — Awesome. Well, any last minute thoughts or recommendations or for the people who are listening who are thinking, Okay, maybe I’ll try this exercise thing?

MD — I would say trust yourself, and follow your instincts. See if you can get curious about, What is fear? and What is a real reason to take a day off? Because if we look at it, it’s actually kind of hard for me to find real reasons to take days off of my exercise at this point. Probably, I would take a day off if I was running a fever. I almost never even get a cold anymore. I almost am never even sick. Me taking a day off from my training is like, just not really a thing that happens anymore.


MD — That doesn’t mean that sometimes I don’t get afraid, or I don’t have a feeling related to what’s going on, and emotion — and I respect those emotions, and I let them process — but at the end of the day, that’s just fear. There’s nothing substantial there. I can’t grab it. I can’t hang onto it.

If there’s room for you to start to say, Okay, how far do I trust myself? Do I trust myself for a short walk today? Do I trust myself for, you know, standing in a waiting room for 15 minutes instead of sitting in a chair right away? You know, not taking a seat on the bus? How far is the trip? How far do I trust myself? You are the boss. You choose that day. How much and how far do you want to take it? Don’t let anybody tell you that you should be doing it differently.

TS — Amen. Thank you so much for being here, Megan, for sharing your story and your expertise. This part of the picture is sorely missed in the fibromyalgia community. Our doctors don’t know how to teach us how to listen to our bodies and do this properly. They just say “Go exercise”. Then we end up on some Couch to 5K that goes way too fast and way too hard. Thank you again, so much.

MD — My pleasure. Always.

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