Ep 301 – Mitochondrial Myopathy: “I Have a Client Who . . .” Pathology Conversations with Ruth Werner

0:00:01.6 Ruth Warner: Hey, I Have A Client Who listeners did you know I have a growing library of NCB approved one hour online self paced continuing education courses that you can do anytime anywhere. Well, now you know. Current classes include, What's Next, COVID-19 Updates For Massage Therapists, and A Massage Therapist's Introduction To Pharmacology Part One and brand new A Massage Therapist's Introduction To Pharmacology Part Two, classes are at $20 each and they confer one hour of continuing education credit. Want to know more? Visit my website at ruthwarner.com and check it out. Be sure to sign up for my mailing list so you'll never miss a new class. 

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0:00:56.0 RW: Hi, and welcome to I Have A Client Who pathology conversations with Ruth Warner, the podcast where I will discuss your real life stories about clients with conditions that are perplexing or confusing. I'm Ruth Warner, author of A Massage Therapist's Guide to Pathology and I have spent decades studying writing about and teaching about where massage therapy intersects with diseases and conditions that might limit our clients health. We almost always have something good to offer, even with our most challenged clients, but we need to figure out a way to do that safely, effectively and within our scope of practice. 

0:01:36.4 RW: And sometimes as we have all learned that is harder than it looks. Today's I Have A Client Who story comes from a recent batch of requests that I got, which included several quite rare or unusual situations, I had never heard of this one before and I always appreciate learning new things plus it gives me the chance to say a lot of very long and complicated words. Our contributor gave me a very detailed description of what they observed when working with this client. But let's start today with the diagnosis, mitochondrial myopathy. And here's a little bit of what our contributor sent. The client is 47. She was diagnosed at age 21 with mitochondrial myopathy, though she has had the condition since birth, her body is weak and full of tension. Some of the tension comes from sitting too much. For four years, she was getting weekly massages that seemed to help her condition. Her prior massage therapist incorporated essential oils with the treatments lavender primarily, which provided some stress relief. She's a big fan of holistic practices and recently started her own Reiki practice nightly to de stress and relax. She's also trying to incorporate walking and light stretching in her daily routine. 

0:02:56.1 RW: Here's a direct quote from the client, "My right shoulder has a tingling feeling with sharp stabbing pains from time to time. My left leg upper thigh feels tense. My left foot is numb, when I wake up from sleeping. I have neck tension causing headaches, both hands have been feeling like they need more circulation." This client also has type two diabetes and high blood pressure. She's prone to bruising easily she has vision loss along with cataracts, hearing loss, sinus issues and headaches. The only medication she told me she takes is Propranolol. Okay, that's enough to get us started. We'll talk about mitochondrial myopathy for a bit and then I'll fill you in on what this massage therapist found during their sessions. To start with, here we have a person who feels weak and tense. Much of the time, it sounds like her left leg and foot are especially affected. Plus, she reports neck tension and her hands feel like they need more circulation. In addition, she's dealing with diabetes and high blood pressure and vision and hearing loss and sinus issues and headaches. And the only medication she reports is Propranolol, which is a beta blocker used for high blood pressure and a few other things. 

0:04:14.6 RW: And according to her diagnosis, something is going on with her mitochondria. Okay, you remember mitochondria, right? They are the, say it with me, powerhouses of the cells. Mitochondria are organelles suspended in cytoplasm, and their job is to turn incoming nutrients into ATP adenosine triphosphate, which you can think of like money. ATP is sort of a metaphor for energy. The more ATP you make, the more energy you have available to spend on things like doing work. In normal healthy people, this is a virtuous circle, as opposed to a vicious circle. With this circle, the more we exercise, the more mitochondria we make. And the more mitochondria we have, the more we can exercise. And that's awesome, right? Most of our mitochondria live in our muscle cells, also our kidneys, our liver, and our nerve cells. These are the cells of the body that consume most of our energy. And if something is wrong with the mitochondria, we are most likely to see it affect some of those cells. There's a handful of diseases that affect mitochondrial function with various kinds of results, depending on which cells are losing out on their energy production. So mitochondria are very special organelles. 

0:05:40.4 RW: Scientists think that they were once independent single-celled organisms, and then they developed symbiotic relationships with some multicellular organisms like us. And now we live in harmony. Our cells help the mitochondria by providing them with a safe place, and mitochondria help us by turning those incoming nutrients into adenosine triphosphate, or ATP. One fascinating feature of this history with our mitochondria is that these organelles have their own identifiable DNA that is not the same as the DNA found in the nuclei of the rest of our cells. Mitochondrial DNA is passed only from mother to child, and this becomes significant with mitochondrial diseases because the inheritable ones can only be transmitted from biological mothers. 

0:06:32.1 RW: All right, so that's just a quick review of mitochondria and why they're important. But what is mitochondrial myopathy? It's not a single thing. It's a group of neuromuscular diseases that especially affect the muscles and the brain, these big consumers of ATP. Sometimes this term is expanded to mitochondrial encephalomyopathies to refer to nervous system effects as well as muscular ones. And just so you know, as we mentioned, there are other kinds of mitochondrial diseases, but we are most interested in the ones that affect the muscles and the central nervous system for now. 

0:07:12.5 RW: Mitochondrial myopathies affect all kinds of muscle tissue, skeletal, cardiac, and smooth. And of course, you can imagine the symptoms will vary depending on the type and location of involved muscles. These are genetic disorders, often sporadic and random, sometimes inherited, and they are present from birth, but they may not become evident until later in life. And as you can predict, all of these affect the production of ATP. We're not going to do a deep dive on how they affect the production of ATP. If that intrigues you and you want to learn more about the five protein complexes in ATP manufacturing, then you will find some resources in our show notes. But in any case, when the mitochondria are busted, when they don't work well, our ATP production becomes inefficient and we produce a lot of waste material like, oh, say, lactic acid. We can also accumulate free radicals. That's a form of oxygen that causes cell damage associated with aging and disease. What does this look like? Well, the signs and symptoms of mitochondrial myopathy depends on what tissues are affected and where. But the main signs include muscle weakness, exercise intolerance with nausea and headache and shortness of breath, also ataxia, that's uncoordinated movement, poor growth, diabetes, heart defects, arrhythmias and heart failure, and some signs of lost nervous system function, vision loss, hearing loss, seizures, learning disabilities. 

0:08:50.4 RW: Many patients also have ptosis, that's P-T-O-S-I-S, which is a fancy term for drooping eyelids or external ophthalmoplegia, which is a way of saying paralysis of the eye muscles. If the facial muscles are affected by this condition, we might see problems with swallowing and slurred speech, and swallowing problems are always problematic because of the risk of aspiration and pneumonia. Like many genetic disorders, Mitochondrial myopathies occur on a spectrum of severity. Some people experience a long, slow onset of reduced stamina over time. Others have more severe versions that may even be life-shortening. There are some treatments for mitochondrial myopathies, I'm happy to say, even though we're not yet ready to repair these genetic anomalies. But many symptoms can be addressed, and we can support healthy ATP production. Now, I'll tell you what I learned from the NINDS fact sheet. With the caveat that no one ever gets to ask me any questions about nutrition, this is emphatically not my field. But what they say is that a combination of supplements of creatine, carnitine, and coenzyme Q10, that's CoQ10, have been found helpful for many people with mitochondrial myopathies. All right, so let's return to our client and hear what their massage therapist observed with bodywork. 

0:10:22.1 RW: Remember, she's 47, she was diagnosed at age 21. She has good luck with aromatherapy and massage for relaxation. She does Reiki on herself. And she says, my right shoulder has a tingling feeling with sharp, stabbing pains from time to time. My left leg and upper thigh feels tense. My left foot is numb when I wake up. Neck tension causes headaches, and both hands feel like they need more circulation. She also has type 2 diabetes and high blood pressure. She bruises easily. She has a vision loss with cataracts, so that could be related to her condition or to the diabetes or both. Also hearing loss, sinus issues, and headaches, and she takes a beta blocker. And here's what our contributor observed. I saw her first for a 90-minute session, and I gave her a standard Swedish massage so I could get used to her body and issues and for her to get used to my touch. She immediately scheduled for a two-hour session for two days later. At the next visit, the client shared she's still tense and in pain. However, she did say she was feeling an improvement in her extremities. For that two-hour session, I incorporated a bit of craniosacral therapy along with some lymphatic work before moving into a standard Swedish routine. 

0:11:42.2 RW: The next time we worked, we noticed an interesting pattern. She's complained about a tingling sensation along her right shoulder blade. When palpating or stripping that area, pain and other sensations then refer down her left thigh and lower leg. But when I work on her left leg, it refers back up to her right shoulder. This seems similar to the patterns proposed by Tom Myers Anatomy Trains. She is committed to weekly sessions, and I'm basically working within her comfort levels, trying to improve range of motion that she has lost due to immobility. I'm not sure how much of her tension is physical versus a psychological hold on her body. And due to the neurological nature of her condition, I'm not sure how much of the tension I can truly release. I've mentioned to her that I'm trying to actively have a conversation with her nervous system so it will know that things are okay. 

0:12:37.9 RW: Oh, and she mentioned that it took about 17 different doctors before she was able to get a diagnosis. God bless her for being an advocate for her own health and trying to get to the bottom of what's going on. All right, that is an edited version of what our contributor sent. 

0:12:54.8 RW: I will add that this client was unemployed and sedentary for quite a while, and now she is employed and very active again. And this, of course, has a bearing on her fatigue and her pain. When I listen carefully to this massage therapist's question or concerns, it seems to me that it comes down to this paragraph. I'm going to quote again, I'm not sure how much of her tension is physical versus a psychological hold on her body. And due to the neurological nature of her condition, I'm not sure how much of the tension I can truly release. I've mentioned to her that I'm trying to actively have a conversation with her nervous system so it will know that things are okay. There are a couple of rich points to dig out of this statement. One thing I want to address is the use of one of my least favorite words in massage therapy lexicon, which is release. This word tends to bother me because people use it to mean all kinds of different things, from having a tight muscle become less tense to unsticking layers of scar tissue to having an emotional crisis on the table. But let's suppose that here in this context, we're talking about tight muscles. 

0:14:06.2 RW: And I will agree, you contributor are not releasing anything. It's your client who does the releasing, again through her nervous system, possibly with your assistance. And that is wonderful. You can help her to sustain these changes by helping her to learn how it feels when her muscles are less tense and what kinds of things she might be able to do through massage and breathing and stretching and increased awareness to move herself and keep herself going in this kind of direction. But the other more important point to explore in this paragraph is about this idea of physical versus psychological tension or holding patterns. And I would posit that these two ways of thinking about tension are not as separate as we might think. We can develop movement and posture habits that are tied to our emotional state. And then they can outlast that emotional state or they can even contribute to sustaining that emotional state. Think about someone with a protective posture that inhibits their breathing, for instance, and how inhibited breathing can then exacerbate a sense of tension and anxiety and protectiveness. My point is musculoskeletal and emotional phenomena are inextricably bound up in each other. 

0:15:28.0 RW: Chronic situations that have lasted for a long time are probably not distinctly or discreetly one thing or the other. And by having that conversation about safety with her nervous system, as long as you carefully observe her responses and make appropriate adjustments, I'd say you are absolutely on the right track. Imagine how difficult it must be to trust and love one's own body. If we are born with a genetic condition that makes our muscles weak, if through massage you can help her find her own unique types of strength, if you can reinforce her sense of an ability to cope with her challenges, then you are absolutely a valuable part of her coping strategy. Contributor, you have made some fascinating observations about this very special client. I encourage you to continue your work and track your observations and your results and see how they move your client toward her goals. And then maybe consider sharing your discoveries in the form of a research poster or a case report. Mitochondrial myopathies are rare, but clients with ongoing weakness and pain are not. Your work could benefit many massage therapists who want to be as effective as possible, so I encourage you to share your wisdom. 

0:16:55.4 RW: Hey everybody, thanks for listening to I Have A Client Who Pathology Conversations with Ruth Werner. Remember, you can send me your I Have A Client Who stories to ihaveaclientwho@abmp.com. That's I Have A Client Who, all one word, all lowercase, at abmp.com. I can't wait to see what you send me, and I'll see you next time. 

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