Full Transcript Introduction to Melissa's Fibromyalgia Journey 0:00 I could have never said that I would be here at all. 0:02 So I'm super grateful that whatever I had to do to reclaim my health had worked. 0:06 So I faced a lot of adversity, 0:08 and the break down of different infrastructures with school, 0:12 the medical system, and working with doctors 0:14 and even my family system and understanding how to navigate it. 0:17 So I faced that adversity, but now I'm taking that information 0:21 and helping other families, helping other patients as a patient advocate. 0:25 This is doctor talks. 0:33 Hi. Welcome. 0:34 I'm doctor Rodger Murphree, 0:35 and I'm the host of the freedom from Fibromyalgia summit. 0:38 I have Melissa Talwar here. 0:40 She's going to be sharing some information about patient advocacy. 0:44 And as a functional medicine health coach, she's gonna be sharing some information 0:48 about just tips that you can do yourself to start to empower yourself 0:54 to be able to take control of your life again. 0:57 For so many of you, so many of you out there watching, 1:00 you know, fibromyalgia robs you of so many things, including your ability 1:04 just to have a normal life, whatever that is. 1:07 But Melissa is, really involved in 1:12 helping those with fibromyalgia get the attention they need. 1:16 And we're gonna talk about a little bit about that, 1:17 about some of the research and the funding that's going out. 1:20 Melissa, welcome. 1:21 Thank you so much for being a part of the summit. 1:24 Thank you so much for inviting me. 1:26 I'm super excited to be here. 1:28 Yeah. 1:28 So you've got a kind of a unique position because you came 1:32 from a background of having fibromyalgia when you were at 14. 1:35 I mean, you know, that's can be pretty traumatic. 1:38 And I think people think for fibromyalgia, if they even think about it. 1:42 But a lot of people don't even know what that is. 1:44 But if they think about fibromyalgia, think of somebody typically a female, 1:48 but in their, you know, in their 40s or 50, they don't think about somebody 1:52 in as a teenager developing fibromyalgia. 1:54 And yet that was your journey. 1:56 And then you're able to overcome that and, and became 2:00 a patient advocate and now a health coach. 2:03 So interesting journey. 2:05 Can you can you share a little bit about how that all happened? 2:09 Well, it happened in very clunky ways. 2:11 If you asked me maybe in the past when I was actually 2:14 going through the worst times of my fibromyalgia, 2:17 I could have never said that I would be here at all. 2:19 So I'm super grateful that whatever I had to do to reclaim my health, 2:23 it worked because it was back then.
From Patient to Advocate and Health Coach 2:27 This was the 90s, just for reference, juvenile fibromyalgia 2:31 or just having someone so young with chronic pain 2:33 wasn't, wasn't existing back then or finding finding the research 2:38 or I mean, this is before social media 2:39 and all those things to connect with other people as well. 2:42 So I faced a lot of adversity and the breakdown of different 2:45 infrastructures with school, the medical system and working with doctors 2:49 and even my family system and understanding how to navigate it. 2:53 So I faced that adversity, but now I'm taking that information 2:56 and helping other families, helping other patients as a patient advocate, 3:01 working as the nonprofit executive director 3:04 and then becoming a health coach, which was a surprise to actually do. 3:07 But I'm excited because this is a great bridge with other healthcare providers to 3:12 where your work is so badly needed. 3:14 So as the executive director of the Support Fibromyalgia Network, 3:20 you see firsthand the lack of research dollars that's out there for fibromyalgia. 3:24 I mean, it's really it's not even a thought. 3:27 It's not even on the radar in comparison to some of the other illness, which, 3:30 you know, we need we need to research dollars for 3:33 for for numerous different conditions out there. 3:36 But, and people here, I think 2020 is 14 million that was 3:41 designated to fibromyalgia research, which you hear that number. 3:44 And that's a nice, you know, but you put that in perspective 3:47 with some of these other conditions like Covid, which was close to 350 3:50 million and continues to grow. 3:54 It's kind of minuscule, isn't it? 3:57 It is. 3:58 And that's what sparked a lot. 4:00 I know there's an instigator in the group court, John said. 4:03 So we sent I was excited to send him a press release 4:06 when we first established the nonprofit, and I said, I, we need to get a research. 4:11 And his say, you couldn't do research without advocacy. 4:15 And I'm chatting with him in Facebook Messenger. 4:17 I'm like, what do you mean? 4:19 I know nothing about advocacy. What am I supposed to do? 4:21 He was like, you're going to have to figure it out. 4:23 And he sent me the autonomy for organization. 4:26 And I was like, man, I don't know anything about advocacy, 4:30 but there is a connection. 4:32 And I realized that if you want the dollars, 4:35 you're going to have to speak up and you're going 4:36 to have to talk to your representatives. 4:39 So there is low funding, but they didn't know. 4:42 But our representatives have been really responsive. 4:44 They ask us questions like, why is it so low? 4:47 That doesn't make any sense. 4:49 You have the numbers, so there's a disproportionate amount 4:53 of funding based on the amount of people that have the diagnosis. 4:56 So they are intrigued. 4:58 We do need to increase research dollars quite a bit. 5:00 We are asking at least to bump it up to 50 million. 5:03 That is that is one of our goals, our first year goals. 5:06 And hopefully you saw it bump up a little bit. 5:09 But we have to continue to advocate and speak up for ourselves. 5:13 Yeah. 5:13 You've been at this for a while now. 5:14 And of course, caught Johnson is Interview's owner. 5:17 He's quite the character loving to death and his his blog, Health Rising. 5:22 I encourage everybody to check that out. 5:23 That Health rising.org, I think, is where you found that we were 5:27 we had this long discussion about just this, this, misinformation
The Need for Fibromyalgia Research Funding 5:31 about fibromyalgia and, and I've shared with the audience here 5:35 a blog that he wrote a few years ago about fibromyalgia is real. 5:39 You know, we still have that hurdle to overcome. 5:41 There's a lot of 5:43 people in the even in the medical community 5:45 that don't acknowledge that fibromyalgia is a real entity, but it it obviously is. 5:50 Do you see that that's changing over the last few years? 5:52 Do you find that the conversation is more welcomed with folks out there 5:57 that you're dealing with? 6:00 It needs to change more. 6:01 I have to be honest. 6:02 And when I hear I think it's more of the language, 6:05 especially when we hear it on social media. 6:08 And here's here's why. 6:09 Because we need these stakeholders, the representatives, to invest 6:14 and so you would never ask people to invest in something like, oh yeah, it's 6:18 not a real they're not going to invest dollars. 6:20 No one would. Right. 6:21 So we need everyone on the same page because we need this research. 6:25 We need more pathophysiology research to actually understand what's going on. 6:29 We've haven't really had that yet. 6:31 We've had some really good quality research in neuroinflammation 6:35 metabolism of the brain. 6:37 So let's get that going and more. 6:39 And then also one thing that I always advise providers to understand 6:44 is that what you say with these words and other people 6:47 watching it translates to other medical providers. 6:50 And sometimes especially with women in pain and women of color in pain, 6:55 they get really dismissed in certain communities. 6:58 So we have to really make sure that we understand 7:01 there is a genuine chronic pain and refreshed sleep fatigue component. 7:05 There needs to be addressed in the doctor's office. 7:08 So unfortunately sometimes it gets translated well, 7:10 that's not a real diagnosis. 7:12 And then the patients don't get treated adequately. 7:15 So these are all things that we have to have discussions about. 7:18 So I think one of the difficulties with fibromyalgia is just the name itself. 7:22 You know, fibromyalgia is a syndrome. 7:25 So fibromyalgia is just a name given 7:27 to describe these common symptoms that people have in fibromyalgia. 7:31 And because of that, that can be very intimidating 7:33 to the physician or the researcher or obviously the patient. 7:37 They've got all these different symptoms and we put a name on it. 7:41 But really those symptoms are just warning signs. 7:43 And that lends itself to realizing that probably 7:47 everybody's fibromyalgia is a little bit different than the next person. 7:51 Yes, there's some commonality, but there also 7:54 some some differences between each each case. 7:58 And so where do you where do you start? 8:00 You know, originally I think that with fibromyalgia people were 8:04 and sometimes even today and folks like treated as hypochondriac 8:08 as a psychosomatic something that they kind of imagine and make up. 8:12 Then it moved down into more of a muscular autoimmune type disease. 8:17 So the rheumatologist took it upon themselves 8:20 to really become a specialist in fibromyalgia. 8:22 I don't think that's worked out very well. 8:24 And now it's moved over. Now to that neurology. 8:26 So we're looking at the disconnect between the nervous system 8:29 and the immune system with central sensitization pain syndrome. 8:32 So it's kind of moving into different categories. 8:35 And as we move 8:36 we're starting to understand a little bit more and a little bit more about 8:40 fibromyalgia. 8:43 Yeah we definitely 8:44 are I think finding the right provider and system and training. 8:48 But this is a great conversation. 8:49 On collaboration with health care providers and how we can 8:53 provide better trained support resources and then really work towards 8:57 improving the patient's quality of life because we know that it can improve. 9:01 There's a lot of different factors in here. 9:03 It's multifactorial getting them if they need to move, maybe potentially 9:07 a physical therapy, occupational therapy, changing nutrition, get sleep. 9:12 Sleep is huge. 9:13 If we can get people sleeping better. 9:15 So I think if we all work together and collaborate, we can really change
Why Fibromyalgia Recognition Still Matters 9:20 the fibromyalgia community and how patients are getting their treatment. 9:24 And I believe that we can do this. 9:27 I appreciate your optimism. 9:28 And, you know, one of the things 9:29 that that really holds a lot of patients back is a lack of hope, 9:34 because unfortunately, what we've seen in the medical community, 9:37 health care community 9:39 is they tell patients with our mouth, you just have to learn to live with it. 9:42 Now they've come to that conclusion because they see that 9:46 traditional medicine alone, this drug therapy is usually not a 9:50 not a long term solution can create more problems. 9:53 And even those in functional medicine 9:55 oftentimes become discouraged with complicated fibromyalgia cases. 9:59 However, and there are numerous people who've been on this summit, 10:03 including yourself, who hate your own story, 10:06 have shared that fibromyalgia is very much something that you can't overcome, 10:09 but you certainly can get your quality of life back. 10:12 And that's not for everybody. 10:14 But certainly it's not hopeless. 10:16 And no one should settle with this idea of learning to live with it. 10:23 Absolutely. 10:23 And I always share that people are on their individual journey, 10:27 and it's trying to figure out where to start. 10:29 And this is complicated for health care providers. 10:31 I'm hoping maybe some machine learning will help out with all of that. 10:34 I was intrigued by Doctor 10:36 Edison's work with the 36 mo holes in the roof for Alzheimer's. 10:40 So that's sort of the component that I used. 10:43 Again, it's multifactorial, 10:45 so maybe someone it needs more assistance in a particular areas. 10:49 And this is the challenge for health care providers to decipher. 10:52 When you look at the blood chemistry panels, 10:55 when you look at deficiencies in different areas. 10:57 Symptomology where did they get started? 11:00 Was it more from an injury or a physical injury? 11:03 Or like I had a concussion, so did that ever get treated effectively? 11:07 And that's this challenge 11:08 that we're trying to figure out with all these different symptoms 11:12 underneath the umbrella of fibromyalgia, I think we can do it. 11:15 I'm excited to see what technology can help us with moving forward. 11:19 But really, I mean, there's still 11:21 there's still principles here that I know you're a fan of. 11:24 And as we talked about different quality of life with nutrition, 11:27 sleep hygiene, I mean, these are obviously important factors for everyone. 11:31 So we can always start with those. 11:34 And you know, I think 11:36 I think I'm guilty, as is anyone who really loves the biochemistry. 11:41 You know, I'm guilty of. 11:42 Well, yeah. 11:42 Well, listen, cover, 11:44 you probably had a problem with your thyroid or you got a problem 11:46 with adrenal fatigue, or you've got a problem, methylation issue and all. 11:50 That's great. 11:51 I mean, that's the backbone of functional medicine. 11:53 How we practice, which is looking for the underlying root causes of these symptoms. 11:59 But you know, when you're got fibromyalgia and you can't even get out of bed 12:02 and someone's telling you, hey, you got adrenal fatigue, 12:06 one of the things that you need to do is to make sure 12:08 you know that you're exercising 12:10 on a consistent basis to build up that stamina and resistance to stress. 12:14 You know, some of these people can't get out of bed. 12:17 So there's a 12:17 you know, there's a 12:18 definitely a disconnect between sometimes what is expected of them, 12:22 maybe more 12:23 so from practitioners who don't treat a lot of 12:25 fibromyalgia patients and then what they can really do. 12:27 And so as a patient advocate, when you're coaching your clients, 12:32 what are some of the steps that you share with them that that they can do 12:36 to empower them to start to have more control over their life and their health? 12:43 Well you will, you nailed it. 12:45 It's the small things. 12:46 And and we really talk about Smart goals and setting these very specific goals 12:50 for them that may be unique for them as an individual, 12:53 and it might not meet the standards of some of the health care providers. 12:56 Or it feels a little slow. 12:58 And I have to remind the health care providers, okay, it's one step at a time. 13:01 So there's patients who are more bedbound like I was, 13:07 you know, maybe it's little steps having them stand out of bed 13:09 and it sounds cheesy, but I did this myself. 13:12 I did most of these things myself. 13:13 It's like doing the Superman pose, like feeling better, 13:16 taking some deep breaths in 13:18 or opening the back door and letting some sunlight in on their face. 13:22 They're still in their pajamas. 13:23 Maybe they're breathing in nature, 13:25 taking in their environment a little bit better with some sunlight 13:29 and then going over and maybe cooking an omelet with vegetables in the morning. 13:33 So it's these progressions for improving their quality of life. 13:37 They start to feel better. 13:38 They start to feel empowered.
Collaborative Care and Hope for Patients 13:40 Maybe they can play with their kids instead of doing their 10,000 steps 13:44 like hula hoop. Have fun. Dance. 13:46 So these are things we encourage them to do so that way 13:49 they start to see how they can improve their own life. 13:53 And it might not be the stigma that they need to set from like a doctor's office. 13:57 But we do see a lot of change just by that approach. 14:01 It's really 14:02 so empowering them to be a little more proactive, I think. 14:05 I think unfortunately, you know, the illness beat you down so much 14:08 that you get you have a tendency to become a little bit passive and give up. 14:12 And that's not to step on anybody's toes or to anybody. 14:15 I mean, I mean, I totally understand. 14:16 And you were there at one time, 14:18 you know, a lot of times are just told that you're just depressed. 14:21 And, you know, it's not that depression causes fibromyalgia. 14:25 It's the other way around. 14:26 I mean, who wouldn't be a little bit down or feel low when you have an illness? 14:30 That kind of robs you of so many, so many things, so many joys in life, 14:34 whether that's your career, your job, your sometimes your marriage, 14:38 your friendships, your social life, your hobbies, I mean, it 14:42 it really totally changes the trajectory of your, your life. 14:47 But I think it's important to just give people like hope, but then give them 14:52 some action steps that then allow them 14:55 to start thinking that way, as I can't. 14:58 There are some things I can do to help myself. 15:00 So what are some additional things that you recommend for your clients 15:05 to help them start to get in the habit 15:08 of doing things that would help help their health long term? 15:12 Well, 15:13 health coaching is all about meeting patients where they're at. 15:16 So that's the open discussion. 15:18 So you've been coming prepared to talk about something. 15:20 You know, you might be off track because they're prepared to talk about 15:24 something and address something else. 15:26 And that's the unique thing 15:27 with health coaching and the other tools that can come up. 15:30 But preparation. 15:31 So all of that is a part of it. 15:33 And then just throwing away a lot of stigmas that get thrown at people. 15:37 And we I don't use the word exercise. 15:39 I use movement, finding joy play. 15:43 I love utilizing play like be a kid again, 15:46 go out with the dog like enjoy time with your kids. 15:49 And that's a big part of it. 15:50 And so even reframing movement better for the fibromyalgia community is huge. 15:55 And taking nutrition and figuring out what that looks like for you, 15:59 even if you have to start with smoothies, make it as easy as possible. 16:02 If you're not good at cooking, adding all of those elements 16:06 and breathing exercises tools that are free are fantastic. 16:10 You can do them at home. There's a lot of different tools. 16:12 There's videos that you can do, so maybe yoga at home if that appeals to you. 16:17 But we're really trying to instill a sense of joy, like making 16:21 sure there's some aspect of joy that it brings you to start there. 16:25 First. 16:26 You and I are 16:27 both big fans of Tear Walls, and I know you've gone through her program. 16:30 She's here. She interviewed. 16:31 I interviewed Eric here on the summit, big fan and really love her work. 16:37 Do you find that your clients 16:41 are resistant to the to her, to her diet? 16:45 The interior walls paleo diet 16:48 is there is a is there any blowback from that 16:50 when you start to bring that up and share that with them? 16:54 Well, I think changing eating habits is always a challenge. 16:57 But when we break it down, 16:59 we try to figure out where's the preparation, where's the confusion? 17:02 Is it the nutrition education? 17:04 Is it access to nutrition? 17:06 Like what does that look like? 17:08 There's always because it's challenging. 17:10 You're given this information like takeout stuff. 17:13 So what we start to do and everything that I've learned from Doctor 17:15 Terry Walsh directly, I was really inspired by her. 17:19 And this is a life changing aspect, was to start adding things in and make it fun. 17:24 So getting a variety of colors in from your fruits and vegetables, 17:28 just start with what you can do and add in and go shopping. 17:32 Adding in spices and herbs, different color vegetables and have fun with that. 17:37 Explore. 17:38 You know, maybe if you're only eating spinach, try some arugula, have fun, 17:42 grow, maybe do a little herb garden with your family. 17:45 So those are these aspects 17:47 that we start exploring to make it fun and just adding things. 17:50 And how you can get sneaky with some smoothies. 17:53 You can add some more veggies in this move. 17:55 These are soups. 17:56 And then maybe try to see if your family can adapt to it. 17:59 But I think that's the unique thing about making nutrition more interesting. 18:03 Instead of you got to take this out, you got to take this out of there
Small Steps Toward Better Daily Function 18:07 like overwhelmed. 18:08 And then they can't eat anything, which makes it complicated. 18:10 So what can we bring in? 18:11 What we can we have fun doing. 18:14 We have potluck parties online. 18:16 We have cooking. 18:17 We introduce them to chefs so they can like, feel more empowered in the kitchen. 18:22 And we all relate to each other too. 18:24 Because especially with cooking and nutrition, it's hard to have enough 18:27 energy. 18:28 But reminding people, you know, you don't have to have to stand. 18:32 You can utilize a stool to sit there and cut 18:36 and figure out different tools to help yourself have enough energy. 18:39 There's a lot of ways to navigate that, and that's the kind of things we 18:42 work on, too. 18:44 I like the idea. 18:45 It's not about what to take away, it's the idea about what to add. 18:49 And once you kind of get that, then as you start to incorporate 18:53 some new no foods, no fruits and veggies, then then you start to look at, okay, 18:57 how can I remove some of the simple carbohydrates, the starches, 19:01 the grains that probably are not doing me any good, 19:04 but it's a it's a series of steps that people have to make. 19:08 And it doesn't have to be. 19:10 It doesn't have to be really that intimidating. 19:11 Although I find that when I first start mentioning her diet 19:15 or not, my diet, which is very similar in a lot of ways, 19:19 you know, the first reaction is, oh my gosh, what? 19:21 You know, what can I eat? 19:22 But then if you if you take time to really 19:25 look at the diet, you see, wow, there's it's wide open. 19:29 It's just a matter of changing your paradigm. 19:31 What you, what you've been eating because that's what you've always eaten to. 19:35 Okay, this is what I should be eating. 19:36 And actually it's very enjoyable. 19:39 And satisfying. 19:41 It's just something. It's just a change. 19:43 That's all it is. Is just a change. 19:45 Absolutely. 19:46 And when I started growing my own food in a vegetable garden, 19:49 it gave me a whole new perspective on what leafy greens look like. 19:53 Different cauliflowers. 19:54 There's different colors to cauliflower. 19:56 So you start seeing this and be like, oh, I can get much more creative. 19:59 And you appeal to people to in different ways. 20:02 Some people are very creative and they want different things and taste. 20:05 So you're just trying to meet them where they're at 20:08 and make it more unique rather than just telling them what to do. 20:12 And I, you know, you really. 20:14 So for fibromyalgia, the only way to feel good again is to get healthy. 20:19 And I know that's so simplistic. 20:20 It's really quite difficult because there's a lot of steps 20:23 involved in your journey, and everybody's journey is different. 20:26 But I don't think you can get there. 20:28 You can't get healthy without a healthy diet is just no where now. 20:32 Diet to me is the long game. 20:35 It takes time to see those results. 20:36 And so you can you can accelerate that with nutraceuticals and then sometimes 20:41 it's needed. 20:41 You know, there's a time and a place for prescription drugs short term 20:45 use judiciously. 20:46 But the diet is something that you can't cheat. 20:49 And eventually you got it. 20:50 You're going to have to pay attention to that. 20:52 And and I think that her book is lays it all out. 20:56 It's a great book. I highly recommend it. 20:59 Yeah. 21:00 And I, I'm biased now because I really had to find the right nutritional path. 21:05 And her level three, I had to go all in 100 days at 100%. 21:09 I went to a conference and that's what you said. 21:11 And that really was a game changer for me. 21:15 How we implement this with other people and figure out preparation 21:19 and these aspects and support them, because it wasn't easy to do, 21:23 it was not easy for me to do the preparation, 21:26 figuring out, okay, I can't socialize if what do I do if I need to eat out? 21:31 Do I need to be cooking every day? 21:32 I had to learn batch cooking. 21:34 I had to learn all kinds of things really quick. 21:37 So that's why I understand it is not an easy thing to do. 21:41 And what we want to do is this sustainable long term change. 21:44 So what can we do to give them the tools so they can implement? 21:47 It may not be as fast as we want, but they'll get it. 21:51 I'm positive. Will help them. 21:54 And along with 21:56 changing your diet, there's just certain daily health habits 22:00 that people can can start to add that will make a big difference. 22:04 Just like a snowball just builds on itself as it goes down the mountain.
Nutrition, Movement, and Sleep Foundations 22:07 What are some additional health habits? 22:09 You know, staying hydrated, maybe taking time to de-stress? 22:13 I mean, what are some of the things that you really encourage 22:15 your clients to do that you think are really, really important, 22:18 even though they may seem to be kind of trivial in the beginning? 22:22 Well, it's interesting. 22:23 It's all the foundations of functional medicine, the functional medicine tree. 22:27 When you look at the roots of some of these aspects 22:29 of getting into movement again, we talked about it. 22:32 You can be fine. 22:33 You can still dance and enjoy music and still do. 22:36 Maybe do your laundry, answer on some music, sleep. 22:38 We all need a better sleep, all of us. 22:41 And especially in fibromyalgia, doing sleep hygiene, really making it 22:46 a good sacred time that you're going to be intentional about getting sleep. 22:51 So that's a huge part of it, is just helping people through 22:53 that understanding the mechanisms of what having maybe taken away your cell phone 22:58 right before bed, right in front of your face, 23:01 and the reasons why there's some really good science about that creating, 23:04 good light 23:05 patterns, you know, morning light taking away, minimizing it in the night. 23:10 So all of those aspects is stuff like it's huge. 23:12 And then of course, you mentioned with relaxation techniques 23:16 which don't need to take that long, like breathing exercises, 23:19 being creating awareness on how you're breathing. 23:22 I think we know with chronic pain, some of us maybe 23:24 have shorter breath work or we kind of constrict. 23:28 How are we holding ourselves? 23:29 How are we actually breathing? 23:31 Are we more hyperventilating? 23:33 So these are all things that we talk about in our groups 23:36 now as a health coach and then as the, 23:39 the executive director of your group, you see that there is this trauma. 23:44 Do you see trauma playing a part in your client's, illness? 23:49 Yeah. 23:49 And there's different levels, too, because that may be the trauma in the beginning. 23:53 And we can diversify it, too, like emotional versus physical. 23:57 But then this whole medical gaslighting, unfortunately, when you go 24:01 and you're doing these patterns from doctor's office to a doctor's office, 24:05 and if you do get dismissed, that in itself 24:08 becomes very traumatic in the process because you're not being heard. 24:12 And it's not only healthcare, it could be schools. 24:14 Like, I have a big heart for people trying to get through college and high school. 24:18 So all of that is part of the system that we're trying to change. 24:22 And I think, you know, unfortunately, they do get what I said 24:25 on the medical Merry-Go-Round. 24:26 They get passed from one practitioner to another because 24:29 he or she doesn't really know what to do with that problematic patient. 24:33 And, you know, eventually they finally get the diagnosis of fibromyalgia. 24:37 And, you know, but then that's really when the journey starts. 24:40 It's not where it ends. It's really where it starts. 24:43 Because at that point, most of the time, the practitioner, he or she that 24:47 finally makes that diagnosis is telling them, we've ruled everything out. 24:51 This is what you have, 24:53 you know, and you're just going to have to learn to live with it. 24:55 We'll give you some medications to help with the symptoms, 24:57 but that's that's kind of where we're at right now. 25:01 And then the the patient has to take that information. 25:04 And where does that leave you? 25:06 It doesn't really hope. You know, what does it 25:09 know. 25:09 And they've been we're doing our own research as patients. 25:12 But I do actually encourage patients to have some more patients with the provider. 25:18 Because in the history of fibromyalgia we've really mostly focused 25:21 on rheumatology 25:22 and that that training and continuing medical education in that field. 25:26 And now that rheumatologists are deferring to primary care physicians, 25:30 we've never effectively given that medical education across the board. 25:35 So we're in a hurry to do that. 25:38 And just this collaboration 25:39 piece, because, again, I do think that we can get there. 25:42 I everybody that's going into medicine really wants to help their patients, 25:46 but we've never given them adequate resources. 25:48 And then if you look at all the public health websites, 25:52 they all have a different definition of fibromyalgia. 25:54 So who if you if you look as a medical provider and like the CDC website, 26:00 it's still listed under arthritis, which the ACR says it's no, it's 26:04 so it's very confusing for everyone and we need to get it straightened out 26:09 very soon. 26:10 I think that's an important point, that you bring up about 26:12 educating practitioners because it's just human nature. 26:16 I remember when I had my medical practice and, 26:18 we would have patients that would come to us that were 26:21 what I'd call medical misfits that kind of had been everywhere, tried everything. 26:26 And even some of those patients we were and we were. 26:28 I thought we did a really good job with these, with these folks. 26:30 A lot of them were fibromyalgia patients, 26:32 but there were some that and I first to admit that 26:36 eventually you just think, oh my gosh, I don't know what to do with this person. 26:39 They're nothing I've tried is out. 26:41 Every test is normal or every test has come back positive that we followed up on.
Trauma, Medical Gaslighting, and Education 26:45 That's not worked either. 26:47 And eventually you get to where you just don't want to see that patient 26:50 on your schedule anymore. 26:51 And, I'm just being candid here now. 26:53 I'm not that way with fibromyalgia. 26:54 I feel very comfortable with fibromyalgia and some of the co-morbid, you know, 26:58 and it's just like gravity syndrome and even more now, more 27:01 with these things that we see. 27:02 But I think, you know, I'm guilty and gives me a little bit 27:06 of appreciation for the doctors out there who don't see a lot of fibromyalgia. 27:10 Patients don't really understand it. 27:12 They feel inadequate. 27:14 They feel stupid that they can't help this person. 27:19 And so they get get a little discouraged. 27:22 And then that bleeds over 27:23 into the conversation from a patient, and then the patient loses all hope. 27:27 So I really like the idea of what you're saying, that we need to really continue 27:30 to do our, our due diligence to educate other practitioners about this condition. 27:36 One, just as we talked 27:37 about earlier, our research is always like, we're going 27:41 we're seeing some new research again with neuroinflammation, 27:44 how the brain is involved, but it's not translated. 27:47 So, we've been going off of older research, 27:51 and we're finding new things that we might need to uncover. 27:54 Maybe we need to do more advanced inflammation blood panels 27:57 to unlock some more information for all of you health care providers. 28:01 But I do love this group approach to as a health coach, 28:05 because we give them that community 28:07 and we help with some of these lifestyle changes that might be a part of the change 28:12 that needs to happen if they're struggling. 28:14 So you're doing all the education expert approach, running the blood 28:18 chemistry panels 28:20 and then coming in and implementing some of these lifestyle changes. 28:23 I think it goes hand in hand. 28:25 And we're learning that with the fibromyalgia community. 28:28 Melissa, this has been great. 28:29 I want to make sure that people can reach out to you 28:31 and learn more about your work and about your practice, 28:34 your health coaching practice. 28:35 What is the best website? 28:37 I know you got the Facebook. 28:38 I know it's very active, got a very active Facebook page, 28:41 but what's the best place for people to find out more about you and your work? 28:46 Support fibromyalgia.org or its support. 28:49 Fibro dawg is the best place for our website. 28:51 And yes, we are on social media so you can find us with our YouTube 28:55 channels, Facebook and Twitter and Instagram. 28:58 We're always doing that as well. 28:59 And then we are the new network for the Inspire Health 29:02 Network as well, so you can interact and join your community there. 29:07 In closing, I just want to thank you so much for your advocacy. 29:10 This is something that we we desperately need. 29:14 And so I really appreciate your enthusiasm, your tenacity. 29:18 And, so thank you so much. 29:20 And thank you for being part of this summit. 29:21 I really, really appreciate it. 29:23 Oh, I appreciate it, too. 29:24 And we welcome people to join us on virtually or on Capitol Hill. 29:29 We're looking for 50 delegate so and one in every state. 29:32 So please join us. 29:35 Thanks again. 29:36 Thank you. 29:37 Thank you for tuning in to Doctor Talks. 29:39 We hope today's episode has enlightened 29:41 and inspired you on your path to optimal health. 29:44 Each day is a new opportunity to make choices but empower your wellbeing. 29:49 For more insights and strategies, subscribe to our podcast 29:52 and visit our website.www.drtalks.com. 29:58 Stay connected, stay healthy and join us next time on Doctor Talks. 30:03 Real talks from real doctors on the issues that matter to you most.
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