In this episode of The ABMP Podcast, Darren speaks with Ruth Werner and Angie Parris-Raney about working with clients who have fibromyalgia, how medical opinions have changed – or haven’t, and how MT’s should reset expectations and instead honor “the human experience”.
“Working with Invisible Pain,” Massage & Bodywork magazine, November/December 2022, page 36,
View Ruth's course, "Fibromyalgia: The Invisible Disease" in the ABMP Education Center!
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0:00:00.1 Speaker 1: Are you a massage therapist who loves to problem-solve? Do you see clients with challenging musculoskeletal issues? If so, then studying precision neuromuscular therapy will help to sharpen your decision-making skills and achieve better client outcomes. Our emphasis is on the problem-solving process rather than the teaching of a singular technique or approach. Led by founder Douglas Nelson each PNMT instructor is a busy clinician with decades of practical experience. Visit pnmt.org to explore our offerings of live seminars, online courses, or the video resource library, the PNMT portal, that's pnmt.org.
0:00:57.8 Darren Buford: Welcome to the ABMP podcast. I'm Darren Buford. And my co-host, Kristin Coverly is on a much needed break. And in her stead today is Angie Parris-Raney, who many listeners know as the face and voice of ABMP's meditate move series, which you can find online at ABMP's YouTube channel. Angie's been a massage therapist for more than 20 years and Chopra Center certified in meditation, ayurvedic lifestyle, and total well-being coaching. Her training explores physical, emotional, mental and spiritual health. Hello, Angie.
0:01:28.6 Angie Parris-Raney: Hi, Darren.
0:01:30.5 DB: How are you today, Angie?
0:01:31.3 AP: I'm doing great. I'm so excited to be here.
0:01:34.9 DB: Yes, me too. All right, I can't wait for our guest, but before that, are you practicing right now? I haven't checked in with you in a while. Are you practicing massage?
0:01:43.4 AP: Well, I am slowly re-entering. So I took a little bit of a break during COVID, I actually had a fractured wrist as we were going into COVID, so I was recovering from that. And then I had a hysterectomy in the middle of COVID, on top of that, but meanwhile I was still continuing with my Chopra certification and practices and learning, just doing... Leading meditation with a local non-profit to low-income single families, and so I was doing that to continue extending the healing work. And then I just got done with a silent yoga retreat in [0:02:23.1] ____ Samadhi. So I feel like I have now, taken myself on a little journey, given myself a little reboot, and now I'm ready to re-enter the practice. So, just practicing with little friends and family, right now.
0:02:36.4 DB: Are you fully elevating? Or are you just hovering now, because you've elevated so much after that.
0:02:40.3 AP: Yes. Right now, I'm questioning whether I even need to speak at this moment, I'm just kidding.
0:02:45.2 DB: Was that hard to come out of that?
0:02:47.0 AP: It was amazing in that it taught me the yogic saying of before you speak enter these three gates, is it necessary? Is it true? And is it kind? And so that really gave me pause every time I would begin to speak coming out of it, and we went from silence into mantra, chant and then song. And so it's just a beautiful way to kind of re-enter the world of speaking again. So, yeah, that's amazing. I'm still kind of buzzing from that whole experience. [chuckle]
0:03:24.6 DB: I love it. I love it. Angie let's turn our attention today to our guest. What can we say about our guests that hasn't already been said? She's our good friend, Ruth Werner. Ruth Werner is a former massage therapist, a writer, and an NCBTMB-approved continuing education provider. She wrote, A Massage Therapist's Guide to Pathology, available at booksofdiscovery.com, now in its seventh edition, which is used in massage schools worldwide. And she's a columnist for Massage and Bodywork magazine and the host of the podcast, "I Have a Client Who... " available on this channel every Friday. For more information, visit ruthwerner.com. Hello, Ruth.
0:04:02.7 Ruth Werner: Well, hello, Darren and Angie, it's so great to see you.
0:04:06.2 DB: Listeners, today we're talking about Ruth's cover feature article in the new issue of, Massage and Bodywork Magazine, which is the November-December 2022 issue, that's likely in your mail boxes now, if you're an ABMP member, or anyone can read it online at massageandbodyworkdigital.com, and that article is about fibromyalgia and it's titled working with invisible pain. Listeners, I'll start by suggesting that you read Ruth's article and watch her 17-minute pathophysiology video in which she deep dives into the chronic disorder. It's incredibly valuable, but because that article is there and her video is there, we wanna move a little bit forward in the progress here in our conversation. And we only have a limited time with Ruth, so we'll deep dive into a couple of things that are really awesome, I found amazing in the article, and I think you will too. Aside from what is fibromyalgia, what can be done, the article presents what it feels like to have it, and these amazing stories and snippets from the client perspective, but also just how to work with fibromyalgia as a practitioner, and the successes and challenges that lie there. So Ruth, let me just kinda start at the beginning here with, what's the percentage of the population that has fibromyalgia? What's the breakdown with regards to demographics?
0:05:21.0 RW: First, I'd like to offer a clarification, which is that I don't talk about technique specifically with fibromyalgia, you said how to work with fibro, and I don't want to convey the impression that this article has a protocol or some kind of manual therapy solution for fibro. I have been asked for that in the past, and it's just not... It's not a thing. Right? So, in answer to your, a more immediate question about how common this is, that depends a little bit on who you ask. So, in Western countries, the estimate is that fibro might affect to one degree of severity or another, somewhere between 2% to 5% of the population.
0:06:06.8 RW: It is overwhelmingly diagnosed more often in women than in men, but note the language there, it is diagnosed more often in women than in men, that doesn't necessarily mean it is more common in women than it is in men. I think it probably is, but I think that we also we need to be open-minded to the fact that the kinds of symptoms and life experience that people have with fibro, and in the culture that we have of who is supported to seek healthcare might make it harder for a man to pursue this, because it's chronic and often hard to describe and hard to pin down pain that has a strong emotional component behind it. And it just isn't as socially acceptable for men to describe an experience like that than it is for women. So, the short answer is, somewhere between 2% to 5%, is mostly diagnosed in women.
0:07:08.4 AP: So, when we were reading the article too, you had talked a lot about different characteristics of the disease, and it sounds like there's a variety of ways that it can present according to who it is and what is happening, but you also identified too what are some of the through lines there that are most common and similar among people.
0:07:34.4 RW: Because we understand so little about the path of physiology of fibro, people who study it usually don't talk about its causes as much as they talk about its components. So, there are these components with fibro that involve things like widespread chronic pain and tender points and sleep disorders, and some other central nervous system things that most people who meet the diagnostic criteria share, at least they share some of them, if not all of them, and they may shift over time. So those through lines include things like really never feeling fully rested. So a person who has fibromyalgia may get seven or eight or nine hours of sleep, that's not the key question. The key question for them is, when you wake up in the morning, do you feel rested? And the answer is usually something along the lines of, "No, I feel like I got hit by a truck," right? So, disruptions in sleep, and we know a little bit about fibro and sleep cycles, and that's described in the article and in the video. Other components include things like a dysfunctional HPA axis, and that's a little bit complicated.
0:08:46.0 RW: We don't have to go into it in detail here, but basically what it means is, a pretty inefficient stress response system. So, it takes fewer and smaller stressors to put people into a sympathetic state, that sympathetic state tends to last for longer, and that's just very, very wearing. It wears us out, and we see that dysfunctional HPA axis as a component, not just with fibro but with several chronic disorders, including things like depression and anxiety and chronic fatigue syndrome. And these often sort of run as a packet. The people who meet the diagnostic criteria for one, very often, at least at times, could be diagnosed with others at the same time. So, the main ones are never feeling rested, having a really hard time managing stress. Dysautonomia in the form of things like getting, feeling dizzy or tachycardic when people stand up really quickly, and there are a few other really, really common through lines. Is that what you were getting at, or did you wanna talk about that little survey that I found? [chuckle]
0:09:54.4 AP: Yes. The survey is really amazing because... Yeah, you collected some really cool information there. So yeah, please expand on that too.
0:10:03.6 RW: I was very lucky when I was collecting information about fibromyalgia, I put it out through my little social media outreach places saying, "Do you have fibro, do you have clients who have fibro? I'd love to talk with you about that." And I got a lot of wonderful generous responses. One of the people who reached out to me is a woman who runs a clinic, and her name is Kate Prouty, and it just seemed like her clinic with other massage therapists was attracting a lot of people who have fibromyalgia, and as a service, to try to be better massage therapists for this population, she and her staff created a survey which I shared in the article, it's in the sidebar, where they ask really simple questions like, what things make your experience worse? What things do you do that make it better? How often do you have a flare? What's it like to talk to your medical doctor about your situation? And then they ask really functional, practical questions about what do you like best when you receive your massage and what kinds of things would you rather not receive. And this just gave a really nice snapshot of this experience.
0:11:13.9 RW: Now, this isn't official research, she didn't... She got informed consent by the people just consenting to fill out this survey, but it's not the sort of thing that would be publishable as a research paper, but I would love to see a massage therapists who find themselves working with people who have fibro a lot to consider maybe gathering this kind of information because there were some surprises and some insights that were unexpected. For instance, one of the main triggers of flare is a change in barometric pressure, in addition to changes in temperature. So that could be moving from summer to winter, but it could also be moving from highly air-conditioned to steamy hot. So people with fibromyalgia often have problems with changes in temperature. And in fact problems with sweating is part of this dysautonomia that a lot of people with fibro report.
0:12:11.0 RW: And almost... Well, no, I don't know about almost everybody, 'cause I don't have the numbers right in front of me. Enough people said getting the right amount of exercise is a really important part of their self-care. So, not exercising enough is a trigger, exercising a little bit too much is a trigger for flares, so people need to work on finding that sweet spot. And I'll tell you, for someone who lives with chronic pain, investing in their own well-being in the form of getting some kind of exercise, that's a huge step in a positive direction. Anything massage therapy can help to support that is gonna be so much more powerful than someone who has not been able to take that kind of step on their own behalf. And that's something that we see a lot with chronic pain. It's really hard to take a step on your own behalf because it's so much work and it just doesn't feel worth it.
0:13:06.2 AP: Amen, because even not having fibromyalgia, sometimes that can be a huge step for any of us, and then compound it with everything that's coming at them with this extra sensory input. I can't even imagine what that must feel like for them.
0:13:21.5 RW: The enormous sensory amplification and the very pervasive lack of support or lack of validation from the medical community and from people around us because we look perfectly fine.
0:13:39.4 DB: Ruth, you mentioned in that survey that people responded to their practitioners, their primary care physicians. You know, it's, on my side here, standing over here, it's so mind-blowing and hard to still believe, because I know that's been a thing. We've written about in Massage and Bodywork magazine about fibromyalgia, 2014. You mentioned the first time you wrote about it was in the early 2000s, and I remember that that being a primary point back then that the medical community hadn't bought in, and then they were still... You still hear words like neglect and dismissed, those type of things. Is that still existent? Does that still exist?
0:14:22.0 RW: This survey was this year. The people talked about how my doctor just says I'm too fat and I should lose some weight and I'd feel better, or they look at me like I'm a pill seeker, that kind of dismissive-ness is definitely still pervasive. I think that the number of general practitioners who are knowledgeable about fibro is still relatively small. Fortunately, we have some people who have developed expertise and we've learned more about this condition so that treatment options are more likely to be successful if you get the right combination of things. But that involves finding the right practitioner and investing in self-care around exercise and diet and good quality sleep, and also maybe some pharmaceuticals.
0:15:14.9 RW: And that kind of taking control of your own health care is easy to say and really, really hard to do, especially if we're living in a body that doesn't feel worth the investment, and if we feel like every step that we take is a fish swimming upstream. And this is why I feel it's so important for massage therapists to really deeply respect and appreciate the people who have fibro, who come in for sessions, because they're not always the most fun people, and they're not the people who you see in your schedule for the day and go, "Oh, hurray. I get to see her today because she always makes me feel happy." Some clients do that, and that's awesome. Our clients who have fibro are probably not those clients because they don't have the spoons to make other people feel happy, they're just trying to lurch from one thing to the next, and they deserve a lot of credit for that.
0:16:09.7 AP: Amen on that too, because when I first started my massage practice, I had a client with fibromyalgia, and this was early in my practice, and at that point I'm still trying to figure out who I am and what I'm even able to do with massage. It was interesting, as I was reading your article and you're talking about the things where the clients are describing sort of how they feel or how they come in, or even how some of the therapists feel as a result of having worked on some of those clients, it started to trigger some of the memories from that time. And I do remember how that particular client, it was really challenging for her, on some days, you're right, some days were much better than others. The days when she seemed almost better able, I guess, to deal with the pain, it was more of a normal interaction as you would with many other clients.
0:17:06.4 AP: But then on the days when it was rough, it was really heavy energy, is kinda how I would feel or how I would describe it, as very dense almost. And it was just... Oh, dragging you down. And I'm trying to be this upbeat person and trying to lift them out of it and everything, and it would kinda get to that point of just like, "Oh man, I gotta see if I can amp this up today to get through this session." And then over time I started really questioning like, "Am I even helping this person? Am I even being effective?" And there was one day where she must have somehow on some level read my mind because she said to me specifically, she goes, "I know some days when I come in here, it's probably really challenging to deal with me and you probably don't think you're doing anything, but just know that what you do helps me a lot." And that is what kept me going.
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0:19:12.0 S1: Let's get back to our conversation.
0:19:16.8 RW: Gosh, I'm so glad that you told me that story. I have a little anecdote, I'd love to share. I had a... I was teaching a class on fibro many years ago, and someone stood up and asked to share their story, and I'm so glad that they did. He said, "I have a client who had fibro. When she first came to see me, she was really upset and depressed and feeling helpless because it was really hard for her to even stand up and make dinner for her family, and I worked with her for a few weeks, and she was really depressed and upset because she could only walk one time around the block before she get really tired, and went for another few weeks and she was really depressed and upset because she could only play eight holes of golf. And I worked with her for... " [chuckle] You know?
0:20:00.4 RW: So my point being that she's making remarkable progress, she cannot see it, and that's... So I talk in the article about how we can be a way for people to reflect back what's happening from an outside perspective, but when we get stuck in situations where all we can pay attention to are our limitations, which is a completely human thing to do, we lose perspective. We've always felt this bad, we will always feel this bad, we have never not felt this bad, and so even though within that someone finds the kernel or the spark to try to make something good happen, it can be really hard to acknowledge it when it does. And so we're put in a really blessed position of helping people to realize the kinds of progress that they make even when they can't see it.
0:20:55.9 AP: So Ruth, I have another question for you. With all things considered, everything that you shared here with us, help us, help other massage therapists maybe reset their expectations as they go into a session with a client with fibromyalgia. Rather than fixing them, how might we help set them up?
0:21:16.9 RW: That's a beautiful question. And I think the answer to it is in the story that you just told it, right? I think that in many ways... So here are some things to hold on to, some... We have to hold on to several ideas at the same time, one of them is, our skills are our skills, and so we come into the room with whatever it is that we bring with us, and if we can, let's leave out our ego and our need to see immediate change, 'cause it's unlikely to happen. Another thing that we need to realize is that our clients are carrying a lot of baggage with them, especially around pain, and that pain may be connected to touch, but the role of expectations... It's such an interesting word. The role of expectations in massage therapy turned out to be extremely powerful. If... And we have data on this actually, if a person enters a therapy room of really any kind of therapy, expecting that something positive is going to come out of it, it is much more likely that that will happen. And we can use that.
0:22:28.2 RW: There are all kinds of ways massage therapists can use this, what we understand about expectation and what we understand about the power of ritual, and by ritual, I mean the ritual of walking in your front door and signing in, the ritual of sitting down to have your pre-session interview, the ritual of getting on the table, all of those things. We can make those experiences add to that sense of expectation for the client having a lovely time. But our own expectations may have to be reset so that possibly, the very best thing we can offer this person is to be present with them in a setting where their body feels like a good place to be. And out of a week or a month or however long it is between their massage sessions, if this is the hour where they get to feel heard, honored, that's a powerful thing to add to their week. And if they don't perceive that they are physically getting better, that's one thing that we might be able to reflect on with them about when they're not on the table, but if we can simply be present with them and believe them and honor them while they're there on the table, I believe that that is the best expectation that we can bring in.
0:23:50.5 RW: I turned out not to be very good at that, partly because sort of... It wasn't a point in massage school for me that I connected with and didn't figure it out for myself while I was still in practice, and it did. I mean, that inability to detach from outcomes shortened my interest in being a massage therapist, and I had... My skills are better put elsewhere. But I think if I had been able to get past that and to understand, and one of my contributors, Jason Nato, said this, that often when people are asking for pressure, what they really want is presence, is to know that you are there with them in that moment and in that moment, helping them feel their body as a positive place to be is the single most important thing happening anywhere.
0:24:43.7 DB: Angie, did you have that when you were working with your client with fibro? That you said, you mentioned it was early in your practice, were you there yet or is that something that you've cultivated over time?
0:24:54.9 AP: Oh, I wish I would have had the skills I have now back then, it really took years [chuckle] of a lot of my own personal growth for me to, as Ruth just said, to finally now arrive and to be able to have that ability to just be, simply be. And I think for me, meditation, the practice of meditation, learning about meditation, helping others to learn about meditation, that has been a really powerful tool for me too. And even through the coaching experience too, meditation is there helping you to watch the thoughts, to see the thoughts, to observe the body, to observe all the things going on around you and not to attach story and meaning to all of it, but to just simply observe it for what it is. And that is a fundamental shift that we do not practice here in the western culture. We always have to be doing and achieving and striving toward something, and this is just the simple beauty of just witnessing and watching it. "It's just a thought. That's all that it is. I don't have to do anything else with it, it's just there."
0:26:07.5 DB: Did your relationship with the client with fibro end positively? How did that... Did it feel successful for them, for you, how did that whole situation come to a close?
0:26:19.2 AP: So this client continued to come to me throughout the years, she... Ultimately, here's the tragic end, she passed away young, at a very young age. And so that is really how the relationship ended. There was a period of time where things were getting more challenging for her and she was coming to me less, and so I sat there in this weird place of not knowing what's going on. Not really knowing what my place was, do I continue to offer my assistance? Is it better if I leave myself out of it, let her figure it out? I didn't really know what my role in all of that was, and then ultimately, I got a call from her husband one day and just said, "She passed away, but I want you to know that you meant an awful lot to her, and it would mean a lot to us if you would come to her memorial service."
0:27:18.4 DB: Wow, I am so glad you shared that story. That is really powerful. Not only... You mentioned years, so you worked with this person for a long time, you had a relationship with this person, you were challenged by working with the client with fibro just as Ruth writes, and yet look at the power of the outcome that you... In the end that you were given by her husband telling you that. That must have felt like a win or a success, just thinking about your impact with that person and their impact on you.
0:27:49.5 AP: Oh, totally, and I'm getting chills right now thinking about this 'cause I really hadn't thought about it in a while till we were getting ready to do this podcast, and I read this article and watched the video and all of it, it just... It reminded me again of why I entered this profession, and it just reminded me why I need to continue.
0:28:07.8 DB: Beautifully said. Ruth will bring this to a close here, because Angie's brought up something really important that you address in the article, which is massage therapist's self-care, when working with clients with fibro, can you tell us a little bit about that?
0:28:22.7 RW: I can, speaking as someone who didn't learn about this until it was too late. [laughter] I think it's great that Angie is here because she has a much more evolved perspective on this. What I can say is being around people and working closely with people who are living in pain, and that pain could be physical or emotional or spiritual, or whatever kind of pain that takes up a lot of their bandwidth, and wanting to be a positive part of this person's life, it is easy to make ourselves feel responsible for getting this person to smile or helping them to laugh or getting them to moan in a way that tells us they feel great, and we cannot take responsibility for that. All we can take responsibility is for bringing our best selves into that room and for leaving expectations of progress at the door. And I think there are a lot of ways we can practice this, and meditation is definitely one of them.
0:29:28.0 RW: And something that I have learned over the years when I know I am heading into a situation that is gonna be very challenging for me, is to take some moments and some breaths where my focus is on positive regard for the people I'm about to deal with them. They might not be my very favorite people, right? But to think and put myself in a position where I want the best for people and I wish them well. And that might not be reciprocal. That's okay, because I'm just responsible for me. So I think massage therapists who are being really conscious and conscientious about their physical self-care and their emotional self-care, and we can use the word energetic self-care as well, I think these things are very much intertwined, is probably a practice that's gonna focus on understanding who we are and where we end compared to the rest of the world. And we can bring into that our best wishes and our positive regard and our skills, and after that, whatever happens is whatever happens, and it's not our responsibility.
0:30:43.0 RW: I hope that gets at what you're after, Darren, it's not a drink more water and make sure you get some exercise and take a walk every day, and... It's really more about what... Because your needs and Angie's needs and my needs for that kind of self-care are going to look a little bit different. But I will say that that one practice of... Especially when I'm heading into a situation where it might be a difficult conversation, or it might be a difficult letter that I have to write, or even if it's like I'm teaching a class and I don't know who's in this class and I'm nervous about it, to take some moments to center myself and by centering myself that is envisioning good things happening to the people I'm going to be involved with, especially as a result of our connection. To me, that just... That helps me feel more grounded. And again, if I were back in practice, I would be a lot better at it now than I was in my 20s, which is really when most of this was happening for me.
0:31:41.8 AP: It really is personal self-care, really is personal. And I think, again, going back to us as massage therapists, it's a very physical practice, so that's kind of our first sort of go-to. We are having a much more well-rounded human experience here, we forget about the emotional, mental and spiritual aspects of ourselves that we also need to nurture and care for as part of our own healing journey. And when we can meet our own emotional needs first, that also helps us to set all of those things aside. So it's not this exchange that I'm trying to get some feedback from this client that makes me feel better or validates my worth and my ability, if you're feeding yourself and you already have that knowing going in, you don't have to worry about that anymore. It does put you in the place of presence, and now all I am here is creating safe space for this client to have whatever experience it is, however it unfolds.
0:32:42.9 RW: No, I'm glad you said that, because that was one of the cool quotes that you used when you were laying out the article is, "Every person who has fibromyalgia is gonna be different. They're all completely unique and they'll be different from day to day, but what they all have in common is they want a safe place where they can feel honored and respected, and that's something we can absolutely provide."
0:33:03.8 DB: I wanna thank our guest today, Ruth Werner. To read Ruth's article, visit massageandbodyworkdigital.com or ABMP members, make sure to check your mailboxes as they show up. And for more information about Ruth, listen to her podcast every Friday on the ABMP Podcast Network, and for more information about her specifically and the work she does, visit ruthwerner.com. Thanks, Ruth, and thanks, Angie.
0:33:27.1 AP: Thank you.
0:33:28.3 RW: Thanks, everybody.
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