PODCAST OUTRO: Hey, beautiful soul, and welcome to Dear body, I'm listening, the podcast for women navigating chronic symptoms, invisible illness, and that daily dance between hope and exhaustion. If you've ever been told that it's all in your head, well, this podcast is for you, because your body is not lying and neither are you.
Hi, I'm Donna Piper, movement therapist, Pilates instructor and chronic illness navigator. After years of being dismissed, misdiagnosed and doing everything, quote, unquote, right, but still getting sicker, I created this space to tell our truth. Here, we talk about swelling, brain fog, nervous system crashes, and the kind of symptoms that don't always show up on lab results. We're going to explore lymph breath, movement, self trust, latest research, books, relationships, basically everything, all from a place of compassion and honesty. This isn't about fixing your body. It's about finally being heard and getting some answers.
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Donna Piper: So on the show today, we have Melissa Koehl. She is a doctor of physical therapy and pilates instructor based in Chicago, Illinois, with over 24 years of experience. She's a Board Certified Orthopedic Clinical Specialist, and spent more than a decade co-specializing in vestibular rehab. Today, Melissa runs a virtual and mobile PT practice focused on helping people with symptomatic hypermobility, including Ehlers-Danlos Syndrome. Before launching her own practice, she worked at the University of Illinois Hospital where she treated patients with complex chronic illness and trauma, and taught in their doctor of physical therapy program. After years of struggling with her own mysterious health issues and nearly leaving the profession, Melissa was finally diagnosed with hypermobile Ehlers-Danlos Syndrome. That turning point gave her the clarity and treatment she needed to not only to stay in the field, but to build a practice dedicated to helping others like her.
Hey, beautiful soul, welcome back everyone to the podcast, Dear Body, I'm Listening. My name is Donna. And today I am really excited that I get to speak with Dr. Melissa Koehl. She's a wonderful PT. I found her through the internet. So there's really good things that come through the internet. And even though I had been hyper mobile my whole life, I had no idea it affected my daily living as much as it did.
So today, I would really like to have this conversation with Dr. Melissa because you may be experiencing the same thing, and the information is always good. So welcome, Dr. Melissa Koehl to the program. Is there anything you'd like to say? I did your bio officially, but anything more you'd like to add on a personal level today?
Melissa Koehl: Oh, no. Well, thank you. That was a wonderful intro, Donna. I'm glad to be here, and excited to chat more about hypermobility.
Donna Piper: Great. Give me and the listeners just a little bit of reference or background about your own personal journey with hypermobility, Ehlers-Danlos Syndromes. Am I saying that correctly? I know other people say it differently, EDS.
Melissa Koehl: That sounds right to me. I don't think they're around anymore to correct us, so that sounds close enough. So my background is, I've been bendy my whole life. I was a gymnast. I benefited from being hyper mobile. I leaned pretty heavily into all of those bendy poses, and did all the things like foot on top of the head, and did lots of extreme back bending, and those kinds of things. I did pretty well as a gymnast, but I ended up having a career ending stress fracture to my lower back when I was about 14, which was a big bummer. But I had quite a lot of physical therapy at the time throughout my gymnastics career because I had many other injuries besides just that one. So that was one thing. Just growing up, I was pretty confident that I wanted to be a physical therapist because I was really interested in the idea that you could exercise and move around. I'm like, well, this is pretty cool. I like movement in general, and you can use this to help people feel better. So I got really interested in that from an early age, but I definitely didn't know anything about EDS, or connective tissue disorders, or anything like that. It made sense to me that because I was bendy, I might have more injuries. And even going into PT school when I started my career, I was like, no one really was talking about EDS in my program. We had literally one slide or maybe two at the most.
So even though my entire PT school career, when we're learning joint assessments and how to measure mobility, everyone would remark like, wow, so bendy. And that's really unusual, because it is unusual in the PT clinic, like most of the patients that you're working with are stiff. So the instructors were always commenting like, you'll never see that. And so it never really clicked that I could possibly even have EDS until much later. As I started working as a PT, I started getting so many other health issues that were related to non-joint things. All the joint stuff, I knew how to manage on my own. From my past and from being a gymnast, I remembered exercises that helped me feel good. As a PT, I knew how to help myself. But all these other GI issues, fatigue, brain fog and so many other things, headaches, I just didn't know how to manage it or where it was coming from> And it took a long time. I almost had to leave my career as a PT because I was just feeling so unwell for so long until finally it dawned on me that this hypermobility thing, I looked into it more and was like, what do I actually have? EDS? I looked into the actual criteria. And sure enough, I think I had a misconception that a lot of people do that. I never had a lot of joint dislocations. I had little subluxations, I had many injuries, but I never had a big joint dislocation. So I think it just immediately ruled it out in my head, even a possibility, until I just actually dove into the correct diagnostic criteria and was like, it was right there on this piece of paper. Oh, I meet all this criteria easily. So that changed how I think about everything.
Donna Piper: That's really interesting because I think I have the same experience. I was a dancer, being around gymnasts and everything. There's a lot more people that look like you, that may have a level of hypermobility. So when you said that when you got into PT school, actually, you're more of an anomaly how you move. My assumption is most people could bend their fingers back. It's not a big deal because I was the same. My joints didn't slip out so I was like, oh, well,it's not really affecting me. But all of the other symptoms that you were talking about, mast cell, brain fog, all those things, is that why you decided to create a program like Ground Control to help women? I put that out of context, but Ground Control is Melissa's signature program. That's how I got really more involved with Melissa through this program where she really talks about how to look at movement through different lenses when you're hyper mobile, and all the things that come with it. It was eye opening, and it illuminated things that I didn't even know. Riding in a car would give me some symptoms, and learning how to move my body differently through this program has been life changing. Can we talk about why you created, or what was your aha moment to create Ground Control?
Melissa Koehl: I don't know if there's one exact aha moment. I had the idea for it for quite a while, because I had figured out on my own from being a PT how to manage a lot of pains, and things that came up for me regularly. I knew that if I did something, I got a massage. If my neck got triggered, and I had arm pain, I knew exactly what to do because I was a PT, and I knew how to manage it. I had all of these tools and all of that background. It was always in the back of my head that everyone should know some of this, maybe not every single thing, how to manage every single injury you've ever had. But if you're bendy and injury prone, and your connective tissue has some issues, there's some baseline things that all of us really should know. It's always been my dream, I think, maybe a future project would be like a class for a gym class for junior high school kids, high school kids that would teach them these fundamentals. You get screened, kids get screened for scoliosis. They also like, well, how hard would that be to also screen for hypermobility and shuffle you over to this class. These special movements and connective tissue where you would learn about mast cells, and learn about dysautonomia, learn how to identify signs of things early on, learn how to move well. That would be my ideal dream.
But knowing that that is a bigger project and maybe too late for a lot of people who are already adults, I wanted to have something that was a very fundamental thing that would help people be able to help themselves as much as possible. Because I know that not everyone can get to a PT at the drop of a hat, or have access to a good PT that understands, or have PT for an extended amount of time. Because you may only get it for just your ankle injury, or just your shoulder injury, and then off you go. So I felt like there was a big need for something that was more comprehensive, that brought up everyone's level of understanding of how to move in this bendy body. So you have this baseline that you could start from a much better place. And then if things pop up on top of that, you deal with that. But that's kind of the short story where that came from.
Donna Piper: Well, that's a beautiful vision. I know for all of my issues, because I have five of these chronic illnesses. I have lipedema, which is a connective tissue disorder, and others. And then mast cell activation syndrome, hypermobility, EDS, POTS and chronic fatigue. And they all have an overlap with those more, I don't know what to call them. Maybe you could tell me that, I call more soft symptoms. It's hard to search for words some days. Or I have a headache, and all of these things, those collective symptoms that you said were on a piece of paper when you get diagnosed. Can you talk about some of the things that, if whoever's listening to this podcast, and if they think they might have it, or if they have a friend, or a niece, or someone, what are some common ideas of just giving some basic information that most people should know. Would you tell people a few points about what to look for, or how to live in the body, or if you have anything that's kind of a huge question, but anything that comes to mind.
Melissa Koehl: I think a big thing is understanding, one. that your body shouldn't be in pain all the time. I think a lot of people get used to the idea because they've been brushed off, or they have so many aches pains that kind of come and go, and change body parts, and it gets relatively dismissed. And not to say that your body is going to always be like that, but that's not something you have to live with. It's not in your head. There is usually an explanation for that. If it's a connective tissue disorder, that makes perfect sense. You may need to do certain things to address it. So it's not something that you need to just accept like, I'm just going to have pain all over the place. The other thing is the fatigue, I think, is a huge one that's under-appreciated, and is a hugely common symptom of hypermobility. I have yet to meet a patient or client of mine that doesn't struggle with it in a very serious way. I know it's not everybody, but I think the most recent research off the top of my head is something in the 80 ish percent of people with HDS complain of fatigue. It can be very impactful in someone's life, and that alone might be a sign that you have a connective tissue disorder. The fact that the fatigue is there and it's so omnipresent, or so significant, that really warrants looking into a little bit more. And isn't something, again, just like the pain. It isn't something that you need to just accept or live with. Because I feel like when people start thinking of hypermobility, at least from standard medical training, you think the joint dislocations, maybe the stretchy skin, and they may not even think to ask about these other symptoms. If you just ask someone, hey, what else is going on with you? They may not even volunteer the information because it's been flying under the radar for most providers, so they don't have an answer. They're like, I'm not going to mention that my neck always hurts. That I'm always tired, and I pretty much always have a headache, and I'm constantly bloated. GI symptoms are the next one after fatigue that I really like to dive into with people, because that's not normal either to just be bloated all the time, or constantly having issues with diarrhea, constipation, or abdominal pain. But people struggle with it for so long without getting an answer, that eventually they kind of stop bringing it up.
Donna Piper: Yeah, it really does. My own experience, you just need to normalize it a little bit like, oh, this is just part of my life. Especially if you've gone to people for answers and you don't really get many answers with it. Could we dive in a little bit more about why fatigue is so prevalent? Is there some science and some things that happen that goes on to make women or men that have hypermobility? And is it more prevalent in men and women? Or is that an issue?
Melissa Koehl: We know hypermobility is, in general, more common in women. How severely it affects women versus men in terms of the symptomatic form, that would be an interesting study. I don't know that we know that. I feel like some men are under-represented in the diagnostic current criteria. There's even some talk that maybe men and women should have different diagnostic criteria, because their joints are different. They tend to not be as hyper mobile. So sometimes, they get missed. Their experience may be slightly different. Obviously, their hormones affect things as well. There's some protective aspects of testosterone for muscle mass, and even energy and things like that. So that is one difference. But to your point of where the fatigue comes from, I wish I had a simple solution because there's so many factors that are part of it. So if we just take the GI aspect of it, if we have chronic GI issues, your gut is a tube made of connective tissue, and if it's extra lacks, there's going to be issues with motility with just the food moving properly from one end to the other. There can be issues with absorption because of inflammation. There can be leaky gut because if the cells are loose, it makes sense that things might be looser there. And then you get triggers to autoimmunity or immune system reactions to food so that creates inflammation, and then you don't absorb nutrients. There's nutrient deficiencies that can be going on causing fatigue. Generalized inflammation tends to be a big one that I see over and over again in multiple systems. More studies are coming out looking at the amount of inflammation and mast cell driven inflammation that's in various parts of the body, and that very well can drive fatigue in a very big way.
In fact, some of the research on long Covid has been considering that it's more complex, but also considering the role of these mast cells and chronic inflammation driving overall brain fog fatigue. That can be a big factor. And then we also have dysautonomia, which is really common. So the autonomic nervous system which controls our heart rate, our blood pressure, sweating, your GI system, there's a number of things that can be going wrong with thatYou mentioned POTS, it is the most common one, Postural Orthostatic Tachycardia Syndrome. And a key feature of that is what we see as blood pooling in the extremities because their vessels are loose, and things are pooling in the legs, and in the pelvis. Or mast cells are driving the expansion of the blood cells. As well, mast cells release different mediators like histamine, which can trigger blood pooling in the extremities. And if more of your blood is hanging out in your feet and at the bottom of your pelvis, not as much as getting back up to your heart and up to your head, that's a big driver of brain fog and fatigue as well. So those are just a few. Most people have a combination of all of those things going on, and you have no idea. And also you're just like, I'm so tired all the time, and I'm not sleeping. You might have sleep apnea, that's also very common in this population even though you're a young thin female. Because things are so lax in the airway, you're not getting enough oxygen at night that it's not giving you restorative sleep that's making you fatigued. So those are just a few to mention.
Donna Piper: It's mind blowing, but just thinking about how much energy the body takes just to properly function with all that going on, with all the different nuances that it has to play with if things aren't properly going down how it should, no wonder. They just might make you tired as well. I've had a lot of chronic pain, which now I know it's more related to hypermobility than I did before. I just thought that I had. I'm a person with migraines and pain constantly. I've had migraines since I was seven. I saw fancy, functional doctors for years, and no one associated my migraines with my hypermobility. And just until recently, I have only gotten a diagnosis, like in a year and a half ago with all these things, and I'm 54 so, and I've been to many doctors with GI stuff, and they didn't connect the GI with hypermobility, which I think is very interesting.
But going back to the fatigue, with all of those things going on, the connective tissue is really the driving factor in all of these symptoms. It shows up internally throughout your body, if your knees are locked, or if your joints go, that is really what you manage. I'm really impressed by your Ground Control program. You have a lot of this information there. I want you to talk about it more. The idea that when you have a bendy, hypermobile body, or with all of these things that slowing down and resting are very much a part of their program, and it's a different sort of paradigm shift for modern people like, do more, exercise more. Many of you that have listened to me and know that I was a dancer, as a Pilates instructor, I ran marathons, I did weight training, I was always active, I ate really clean, no sugar, blah, blah, blah. And when I would go to doctors, especially when my lipedema was getting worse, they would say, well, maybe you should eat less, and move more. Or get some more rest. It wasn't really addressed. Or maybe you're really not eating, like you say, there was a lot of that. So with your Ground Control, especially with chronic fatigue, and you mentioned long Covid, those have some overlaps with them. That's probably a whole other conversation. But really, can you talk a little bit about why resting or taking it slower is much more productive for a bendy body, or hyper mobile body?
Melissa Koehl: That's a really good point. I'm glad you brought that up, because it's really common. I find in this population for people to be overachievers, right? It's not always. Some are under everyone's spectrum. But very often, especially if you've been an athlete and you've leaned into those things, as a dancer, or gymnast, swimmer, musician, whatever the case may be, there's a big overlap between hypermobility and neurodivergence as well, which is really, potentially, there's another avenue for this where there's a certain drive to get involved in something, and really challenge and push yourself. It may have served you for a certain amount of time well, and it's kind of hard to unlearn that later down the road, even if your body is protesting, even though it's like, you know what? You have absolutely reached the limit of what you can do. It feels incorrect to not challenge yourself to the max. It feels like, well, what's the point of doing this if I'm not going to sweat, or feel like I'm sore the next day, or things like that. But if we think of it, like you said about the connective tissue part of things, it's not just your muscles that you're working out when we move, it's the tendons, the ligaments and the fascia, all of it needs to be repaired. And when we do exercise, it's a stimulus intended to break the body down in a very specific way. I'm literally going to make these micro-tears, these muscles and tendons with the goal of repairing itself.
And if we do that too quickly, faster than your body can regenerate itself, and if there's already a connective tissue disorder, meaning that it takes longer for those connective tissue cells to repair themselves, it makes sense the more you you just hit yourself, hit, hit, hit with that exercise stimulus. If you're not giving it time for that repair, it ends up becoming a down spiral, rather than an upward spiral where you're actually building. You give your body the time to repair between sessions, and respect the energy level that can be a wave that you're riding to understand from a cellular perspective what your mitochondria and your ATP how much energy they can effectively produce on any given day. So it's not that you necessarily need to go low and never work out hard again. I feel like that's the barrier to thinking this way. It's like, well, I don't want to just do nothing like that. That sucks. But if you think of it as like, well, this is the step to get you back to doing the higher level stuff that you want to do, take just a couple steps back in order to be able to more effectively step forward. And it's a hard lesson. I've had to learn it myself, literally like a million times over by doing it wrong and just wiping myself out, injuring myself over, and over, and over again. And then convincing yourself, well, this time will be different. And it never is until you finally learn. And same with working with patients too. I feel like when you go to a PT and they give you too much to do. Again, everyone's different. Once you start working with this patient population, it becomes very obvious that everyone needs to start with so much lower intensity, lower volume. And that is so much more effective than just trying to start at the finish line.
Donna Piper: Are there a lot of PT's that are aware of hypermobility? Your program is very specialized, and it's great because it is online, and people can get to it. And then after Ground Control, she has a program called It's So Easy, which I'm also in, which is a really nice supplement and a progression. But my experience is what I consider the health and fitness industry forever. I wasn't looking for it because I figured hyper mobile, I didn't have symptoms. But I would have never considered myself dieting to be diagnosed with this either. Is it still kind of relatively a small group, or people knowing about it a little bit more?
Melissa Koehl: I don't have data to say how many are out there, because there isn't any official credentialing to say, hey, you're a hypermobility specialist PT. There isn't a certification or a board certification in that. In fact, I think the closest thing in the PT world we have is the orthopedic clinical specialist exam. You have to PT for five years, and then you can take the very comprehensive exam. When I took it in 2008, it didn't mention hypermobility once. Not at all. This is a long time ago. And the next round eventually changed the way they recertify. People have to redo the test at some point. I'll be curious to see if they even put it on there at all, because those are the type of PTs that most hypermobile people would end up with are orthopedic specialists. Unless you're a kid, and maybe a pediatric therapist might be more aware. Thankfully, with just the internet, social media, things like that, people being just patients and providers like me that are just sharing information, it's definitely getting out there more. And there are more providers than ever before. And the EDS Society website is always a good place to search. If someone's looking, how do I even find somebody that website has a provider search, and that's usually a pretty good place to start. Local Facebook groups EDS, that's usually a good place to look on who's good, who's available, who's seeing clients, who didn't move away. Those are pretty up to date. But outside of that, it can be tricky. It can be hard to find people that really understand this in depth because you really need to take the time and the initiative to learn it separately from what's kind of being taught in most standard PT programs and medical schools. There's not a standardized way to learn this kind of information outside of the EDS society. Their program for providers, which I highly recommend to anyone who's a provider out there.
Donna Piper: Some of my other things, there's some more stigmas, especially chronic fatigue. Is it really a thing? Is it kind of made up with hypermobility in the PT world? I don't know if you cross over the OTs as well. Are the teachers and people that are teaching new physical therapists, is it even on their radar? Because they're not really taught about it, and it wasn't even on your test. Is there a stigma like, oh, it's really not a thing. From PT teachers and how they taught it with that, when you became diagnosed with it, what did people are like? I guess believe is not the correct word. But you know what I'm trying to say, right?
Melissa Koehl: Yeah. I think it depends on the program how invested the instructors are at that program are. It's like a sub area of PT. So if someone in their program, if an instructor has EDS, they're probably going to learn a lot about it. Or someone has a family member, for example. I know a couple of schools that are doing a much better job. I wish I could remember, there is a school in Wisconsin that, because I was complaining about this on social media one day like, what schools are out there doing something? And some students were like, my school, my school's good. I want to say it's a University of Wisconsin Madison, but I'll get back to you. But apparently, they have more in depth entry level education on that, and there's been a few PT students that have reached out to me that I've worked with, that as they're finishing up their doctorate, they have used hypermobility as part of their case report, or a paper that they've written for one of their classes, or given presentations, and learn that there are definitely people that are in PT school that have, I know for facts, they've asked me for some consultation on what they should talk about. I know that there's people out there trying to get it more mainstream into these programs. The trouble is if any education is like that, once you add something new, then they have to take something away. And that's where I think the problem is. There's already so much in here that's required, what's on the boards, what do we remove if we spend more time on this? I feel like there's definitely room for at least a little something, a little bit more without sacrificing too much. But there's definitely room for a lot more, even though it is getting better.
Donna Piper: Seems to be pretty prevalent. A very small group of people that you come across as you look at, especially because there is, and you would probably know the words better for this, but EDS has at least 13 subcategories. And then there is Hypermobility Spectrum Disorder, which is HSD, and then there's hyper mobile. If you have some connective tissue that makes you hyper mobile in some way, you might be subject to any, or all of these. And the strange thing is, with all of this, just because you're hypermobile, you might have a degree of one or the other. You don't have to have POTS or MCAS, you usually do. But the severity of how it affects your life is a full range, which makes it tricky.
Melissa Koehl: Yeah, completely. There's a misconception that Hypermobility Spectrum Disorder is less diagnostic than Hypermobile EDS. It's like a milder form> When in fact, there are two completely overlapping things. There's a lot of debate as to whether they are different in any way. The way the criteria is set up right now, the only clear differentiation to meet the HEDS criteria, there are a few other non joint signs that you have to meet. A certain number of things like stretchy skin, atrophic scars, and a high narrow palate, things like prolapse, either organ prolapse or mitral valve prolapse, a couple other signs of connective tissue disorders in the body. So once you meet that cut off that gives you the sign that gives you the official diagnosis of Hypermobile EDS versus Hypermobility Spectrum Disorder, many experts will argue that it's arbitrary. Because symptomatically, when they're treating these people in the clinic, they're the same, right? This group has scars, and maybe their skin's a little more fragile. But these people have just as bad dysautonomia and POTS. And their mast cell or upper cervical instability, they can be just as severe. Someone with HSD can be struggling big time, whereas someone with Hypermobile EDS can be like, I'm actually pretty okay. Other than that, I do have a few joints that I have some pain here and there, and I'm a little fatigued. But generally, I'm living my life. They're both a spectrum. At this point, we really don't have a clear definition of like, how are they acutely different? It'll be interesting to see how research changes over time as they look more into the genetics of all of this on a cellular level. I think it's important that people understand that if you have HSD, or if you're have multiple joints that are hypermobile and you're having other systemic things going on in your body that aren't making sense, that there's a good chance that you have Hypermobility Spectrum Disorder, or Hypermobile EDS. Both are equally as valid of a reason to explain some of this.
Donna Piper: And now, what is your feeling and stance on getting diagnosed, self diagnosis versus an official diagnosis? Going to the EDS website would be a good place to find your provider. But I've heard different stories that it could be challenging to find even providers that will send you a reference to get a diagnosis. So what is your take on all the diagnosis part of it? Does it matter if you're hypermobile? Join Ground Control, and it'll help you no matter what.
Melissa Koehl: I'm a fan of getting diagnosed, if you can, for a number of reasons. I know it's not always practical. You can definitely get help, and start moving in the right direction by working with providers. Whether or not you have an official diagnosis or not, most can work as if you potentially have this going on, and start treating you appropriately. If they understand. My main thing with that diagnosis is getting vocal about it, and advocating for yourself for it. If you have the energy to do that, it helps. From a micro level, it's an advocacy type of tool where you're bringing it up. You're talking to providers, you're showing some people that may not have considered the idea that, hey, this is truly a spectrum. One of the data points on the spectrum that it can look like this, it can look like this, it can look like this. For each provider that you encounter, once they see it on your record, they start to put two and two together. And it might help other people get recognized down the road too, because they'll realize that not everyone with EDS isn't necessarily going to come in here covered with braces on their body. They could. But there's also other versions of this that are out there.
So from that perspective, I think it's a good thing. I do think it opens up doors towards other care that you may not be able to get again depending where you're at. Because sometimes, people will treat you regardless. But it does seem to give you a little bit more access to treatment of the conditions. If someone already understands that you have Hypermobile EDS, it can help you with things like surgeries if your surgeons and the surgical team knows that you have a connective tissue disorder. You can talk to them ahead of time to be more careful with your neck and airway, and think about what kind of sutures they're going to use in protecting your immune system so that you don't have a big mass cell flare from the surgery. Those kinds of things can be really helpful. There's a lot of benefits, although it is a little tricky because you have to take the time and find providers that understand how to appropriately make the diagnosis, which isn't easy. So that's from an energetic standpoint. It can be a lot or costly, depending on your insurance. And so that's kind of the bigger downside is, the amount of time and effort that it takes to get it done.
Donna Piper: I'm not holding you to this, just in general. Once you do get a diagnosis and you get a referral to a PT, does your PT referral do that? I know that sometimes, if you have an injury, there is a referral process to work with the PT once you get diagnosed. Or is it more to have that on your record so you know the anesthesia, or whatever is with the surgeries that you're talking about might be, or maybe your recovery time might be a little longer if you have surgery with this and that?
Melissa Koehl: It would be individual. So if you are going in with joint pain that needs to be addressed with the PT, then that might be one step like, okay, here's the diagnosis you get. The diagnosis code of hypermobility or Hypermobility Spectrum Disorders that goes in your record, that may help the PT to be able to justify more visits from your insurance. Again, every insurance is different. I can't say how it all works. But if you have that versus low back pain, you may be able to get more visits covered. When you're like, okay, well, I came in here, my primary thing today was low back pain. But actually now, two weeks later, it's my shoulder, and now it's my neck, and now I sprained my ankle, you may have more freedom to treat the whole body with that appropriate diagnosis versus 24.5, whatever the code for low back pain is, and then you're treating the neck, and you haven't documented it appropriately about how one justifies treating the other and it gets complicated. So there's a little bit of insurance.
Donna Piper: That does help, especially for a motivator to go through the energy. Because when you do have brain fog, and you are tired and dealing with all of these steps, it can be overwhelming. I'm just remembering, I think you have a program that talks people through this?
Melissa Koehl: Yeah, yeah, I do. I have a course called Navigating Healthcare as a Hyper mobile human. I'm sure you went through this as you started to put two and two together with hypermobility. It's like drinking from a fire hose. Like, whoa. First of all, your mind's blown. Like, how did no one figure this out until now? Also like, wait, that's part of hypermobility, and this symptom has to do with it. And wait, what about my headaches, my problems with my pelvic floor, my sleep, weight? It starts to get a little bit overwhelming. I put together a course that is ideally teaching the nuances of what you need to know, but not overwhelming to a point because this could be a whole master's program of learning all of this stuff. So I kind of put together the biggest dial over things that I end up spending most time with my clients one on one. Because I guess, PTs have the luxury of spending more time with people, and not just doing exercises like it. While we're doing exercises, we're talking about their fatigue, their diet, their sleep and all of these things, and helping them figure out what other providers they should see. How to talk to them appropriately, and what kind of tests to ask for. That's a big part of our role as PTs. We have this luxury to be like, hey, I speak the medical lingo. Let me help you out in terms of figuring out who you should talk to, and what to ask for. I have a DIY program that talks you through symptoms to look for, testing for mass cell dysautonomia, MECFS, upper cervical lenses, and all these common things.
Donna Piper: That's amazing. Anyone that's interested in that, I will leave all of Melissa's resources links to the show notes, and how to get in touch with her. But to know the language of what to say in order to get a referral to someone is huge. There are some magic words out there in the world of medicine. You could say the same thing. But if you don't say the right word, that's like, oh, I could refer to that, or I could use this to substantiate a referral.
Melissa Koehl: It's helpful because doctor's visits are five minutes, 10 minutes. It's short, and there's such a limited opportunity to get your point across, and what you're trying to get out of that visit. So if you know how to maximize that time and say just what you need to know, what you need to say to get the outcome that you're looking for, it definitely helps save a little bit of the medical trauma that happens.
Donna Piper: That is a real thing too. So what wonderful resources that you've created for this vision to really help all of us that have these complex things. Because you might get diagnosed with mast cells, and then realize that it's your connective tissue as well. There's so many different inroads to this. So by really understanding all the different avenues that may lead to a connective tissue disorder that really needs to work is huge. I'm going to just ask you a couple last questions as we finish up. What is one thing you wish every woman living with a complex or misunderstood condition could hear and believe? What sage advice to anyone just living with these complex conditions to have them understand about themselves, or their body, or their role, or anything you'd like to, whatever you want to say is perfect.
Melissa Koehl: I think the one important thing that everyone benefits from hearing is, it's not your fault. There's so many people like you that are told, oh, if you just eat a little bit better, if you were to exercise more, this would all be better. And 99% of the people that I work with have already done all that. If you had a normal connective tissue, a collagen normative body, you would be like the master at training everyone around you in how to lead a healthy lifestyle, and how to feel phenomenal. And I'll give a perfect example. My husband went on a health kick a month ago and he's like, I feel amazing. And I'm very happy for him. I got to do all that all the time, and I have been for years. I'm way better than it was, but it's not a matter of just doing what average people do to be healthy. You have to do that. That's a baseline. You can't sleep and eat garbage and whatever. But there's definitely extra things that need to be considered with a connective tissue. There it is more challenging, and giving yourself the time to find the providers that truly understand it. You deserve that. Give yourself the time to rest without apology, and give your body the rest that it needs. That's so important. Your body truly does need it. Not that you need to just lay around and do nothing, of course, but it does need more rest. It needs more nervous system recovery time. For sure, our bodies are different. We're like orchids versus dandelions.
Donna Piper: I love that, yeah. I'm so happy that you said that. It's so true. I've had the same experience where my husband might change one or two things, and I've changed a million of those things, and I don't waiver. I don't have that euphoria of like, oh, I change these things, and I feel fantastic. And then 10 other people are like, oh, I just did this one thing for 20 minutes, and I'm just fine. So I love that you say that it is that kind of paradigm, and that way of looking at wellness does not work for complex issues at all. There's two different roadmaps that don't intersect like that. It's not easy. It is challenging. I like that you say to give yourself time and patience with really figuring it out. And one last thing, what is one truth insight or piece of knowledge that you personally, if you would have known about earlier, could have helped you move forward or faster on your healing journey? I do this podcast so people have information to find a little nugget that's going to help them go a little bit quicker on their journey since mine was over 20 plus, 30 years to get diagnosed with anything. Is there one thing that you were like, oh, if I would have just someone told me this 20 years ago, that would have kind of made my journey a little easier or faster to get where I needed to go.
Melissa Koehl: I think it would be that you don't need joint dislocations to have connective tissue disorder. If I had known just that one thing, which I really, truly didn't understand, that would have changed everything. Because then, I would have put together, okay, this hypermobility cell block stations, fatigue, brain fog, GI issues, all of those things paint a very clear picture, and you don't need to necessarily be someone that's dislocating left, right and center, or needs a bunch of braces to hold yourself together. There are people that are in that situation, but there's a spectrum, and the far end still deserves just as much attention.
Donna Piper: Oh, I love that. That's so great. Well, thank you so much for having this conversation. It was very informative for me, and I think to anyone that's listening. Is there any place you hang out or you would like to tell people where to find you that you always connect with, whether it's Instagram, another social media or your website, if you have any.
Melissa Koehl: I'm usually here hanging out in my house.
Donna Piper: Those will be in the show notes.
Melissa Koehl: I'm on Instagram a lot at dr.melissakoehl.pt. I'm also on Tiktok, which I am not as great about posting there. But usually, most of the stuff I put on Instagram, I just throw it on Tiktok. I have a YouTube channel that's got some exercise videos and some educational stuff on there. Those are the main places.
Donna Piper: I didn't mention this at the beginning, but your business is Chimera Health. Is that correct?
Melissa Koehl: Yeah, that's my business name. Chimera is a Greek mythological beast from Greek mythology. It's a hybrid creature with the head of a lion, and the tail is a snake, and then it also has a goat head sticking out of it. So this hybrid creature represents my hybrid approach to health and fitness, and I just like things that are fantasy based, sci fi, anything imaginative like that. That's my company's name. It's just my small little company.
Donna Piper: Well, it's gonna grow. It does a lot of beautiful work. It helped me. I know all the students that you have through Ground Control and all the others. It's so easy that you've helped a lot of people understand and get a baseline. And if nothing else, it's like, oh, gosh, I'm not crazy. These symptoms are just not normal. There's a way to manage them. So symptom management is huge. You don't have to be in pain all the time. Or and just being told that it's not really normal to have bloating, you just don't have to live with it. There's things that you can do to start addressing that. I'll leave her links to that. You have some cool shirts and merchandise, so check out her website. If you think that you are hypermobile or even if you're not, or you have some of these things, bloating, brain fog, the workout, and your approach to working out changes, because I've have certifications, Master's program and all these things about fitness, but I never really addressed hypermobility, because I didn't think it was an issue. Because it wasn't, like you said, a major issue. So just changing how I view my body with a connective tissue issue changes how I move, and changes my pain levels. So for anyone out there, or a friend that you have that you know that has these chronic headaches and are tired all the time, maybe they need to check out Dr. Melissa, that could be a key. Or if they start working out and they get injured or fatigue, or they have two good workouts during the week and then they can't show up to the gym, it's not because they're lazy, their body's probably responding to being over activated. Correct?
Melissa Koehl: Right. Above and beyond its capacity, it needed more time for recovery.
Donna Piper: Thank you again, so much. And highly encourage everyone to check Dr. Melissa out. Until next time, and I hope you guys have a good week.
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PODCAST OUTRO: If this episode made you feel even a little more seen, brought you a dose of clarity or pointed you toward your next step, please rate, review and share it with someone who's been quietly carrying the same questions. You can find some more resources, blog posts and healing tools over at donnapiper.com. Don't forget to subscribe so you never miss an episode. Until next time, Dear Body, I'm listening, and I am so glad you're here.
