CMT Simplified
Welcome to CMT Simplified, brought to you by the Hereditary Neuropathy Foundation. This podcast delivers bite-sized updates on the latest research and advancements in Charcot-Marie-Tooth disease (CMT). In episodes under 20 minutes, we cut through the jargon to bring you clear, concise insights into breakthroughs, treatments, and scientific discoveries shaping the future of CMT.
Perfect for busy listeners, *CMT Simplified* is your on-the-go resource for understanding complex information in a straightforward and approachable way. Stay informed, empowered, and up-to-date—one short episode at a time!
CMT Simplified
Managing Pain in CMT: Strategies and Solutions
This episode dives into HNF's ABCs of CMT Pain Management Guide sharing effective strategies for managing pain associated with Charcot-Marie-Tooth disease (CMT). By exploring topics from dietary changes to the latest research in pain relief, we empower listeners with resources and insights to improve their quality of life.
• Understanding neuropathic and musculoskeletal pain
• The role of diet in pain management
• Anti-inflammatory foods and dietary choices
• Exercise as a key component for pain relief
• Overview of topical treatments and prescription medications
• Supplements that can aid CMT pain management
• Importance of bracing and orthotics
• Exploring holistic and alternative therapies
• Mental health considerations in chronic pain management
• Information about the CMT Summit and available resources
Download, order, or view the full Pain Guide here!
Register for the 2025 CMT Summit in Nashville on 4/24-26
Access FREE CMT Exercise Classes on MovementIsMedicine.com
Thanks for listening! Learn more at hnf-cure.org and subscribe for more updates on CMT research and advancements.
Welcome to CMT Simplified, brought to you by the Hereditary Neuropathy Foundation. This podcast delivers bite-sized updates on the latest research and advancements in Charcot-Marie-Tooth disease, CMT. With episodes ranging from 10 to 20 minutes, we cut through the jargon to bring you clear, concise insights into breakthroughs, treatments and scientific discoveries shaping the future of CMT. Perfect for busy listeners. Cmt Simplified is your on-the-go resource for understanding complex information in a straightforward and approachable way. Stay informed, empowered and up-to-date. One short episode at a time.
Speaker 2:You know, for so many people dealing with CMT, managing pain is just a daily reality.
Speaker 3:Yeah, it really is.
Speaker 2:It's one of the most common and honestly frustrating parts of this whole condition. I would agree with that, so that's exactly why, today, we were diving deep into this guide.
Speaker 3:Okay.
Speaker 2:The ABCs of CMT Pain Management.
Speaker 3:All right.
Speaker 2:It's put out by the Hereditary Neuropathy Foundation and it's packed with tips and you know it's really encouraging to see how much research and progress is being made in this whole area of pain management for CMT?
Speaker 3:absolutely, yeah, yeah. I think a lot of people just assume that chronic pain is something they have to live with right but that's not necessarily true no, not at all.
Speaker 2:So first things first. This guide tackles both neuropathic and musculoskeletal pain.
Speaker 3:Okay.
Speaker 2:Recognizing that someone might be dealing with just one or even both.
Speaker 3:Yeah.
Speaker 2:Can we break those two down a little bit more Of?
Speaker 3:course. So neuropathic pain is essentially caused by damage to the peripheral nerves.
Speaker 2:Okay.
Speaker 3:And so those nerves misfire and send incorrect signals to the brain, which you then experience as burning, tingling, stabbing or even that sort of electrical shock sensation.
Speaker 2:So that's like the nerves gone, haywire kind of pain.
Speaker 3:Yeah.
Speaker 2:What about musculoskeletal pain, though?
Speaker 3:Musculoskeletal pain is a little bit different.
Speaker 2:I feel like that one's maybe a little more straightforward. Yeah, like muscles and skeletons.
Speaker 3:Exactly, cmt often leads to muscle weakness and imbalances.
Speaker 2:Okay.
Speaker 3:Which then affect how your joints move and align. Interesting Think about, like common CMT issues like hammer toes or high arches.
Speaker 2:Right.
Speaker 3:Those put stress on your feet and can cause significant pain.
Speaker 2:Oh, I see so it's not just the nerves themselves.
Speaker 3:Right.
Speaker 2:But the way the whole body's working or not working together.
Speaker 3:Exactly, that's a great way to put it, and addressing both types of pain often requires a multi-pronged approach, okay, cool.
Speaker 2:So one thing that surprised me in the guide was the emphasis on diet.
Speaker 1:Okay.
Speaker 2:I mean, I know eating healthy is important in general, but how much impact can it really have on CMT pain?
Speaker 3:You might be surprised. It's all about inflammation. Both neuropathic and musculoskeletal pain are often driven or worsened by inflammation in the body. What you eat can either fuel that fire or help calm it down.
Speaker 2:Okay, I'm intrigued. Give me some specifics. What are we looking for at the grocery store? What should we be eating?
Speaker 3:Think vibrant, so colorful berries are bursting with antioxidants that can protect those precious nerves from damaged leafy greens.
Speaker 2:Love those.
Speaker 3:Pack a punch of vitamins, while fatty fish like salmon deliver those omega-3s we hear so much about.
Speaker 2:Right.
Speaker 3:Those are fantastic for reducing inflammation. Yeah, and don't forget about nuts Nuts they're a good source of magnesium, which can help with muscle function and cramping.
Speaker 2:It's like building a superhero team for your body.
Speaker 3:Yes.
Speaker 2:But I'm guessing there are also some dietary villains that we need to watch out for.
Speaker 3:For sure. The usual suspects are processed foods, sugary drinks and alcohol.
Speaker 2:Okay.
Speaker 3:They all tend to increase inflammation, making your pain management journey a lot tougher.
Speaker 2:Yeah, that makes sense. It's funny, I never thought of my food choices being directly linked to my pain levels, but it's clearly a big piece of the puzzle.
Speaker 3:It really is, yeah. And speaking of things we can actively do, exercise plays a vital role as well.
Speaker 2:Now I got to be honest. Exercise can be a little challenging with CMT. You know, fatigue, balance issues, muscle weakness. It's not always easy to get motivated.
Speaker 3:I hear you, and that's why finding activities that are both enjoyable and safe for you is crucial. The HNF actually has a fantastic free resource. Their Movement is Medicine initiative offers online fitness classes tailored for people with CMT.
Speaker 2:Seriously Free CMT-specific workouts online.
Speaker 3:Yes.
Speaker 2:Okay, I need to check that out. Where can I find those?
Speaker 3:Easy Just head to movementismedicinecom. They have a whole library of classes so you can explore different types of exercise and find what works best for you.
Speaker 2:That's awesome. It's so great to see organizations like the HNF really going the extra mile to provide this type of resource.
Speaker 3:They really are. And beyond those targeted exercises, sometimes even gentle activities like walking, swimming or yoga can make a difference. Oh, okay, it's all about finding ways to improve circulation, strengthen those muscles and keep your joints moving.
Speaker 2:Makes sense. So we've covered diet and exercise, two things that we can control to a certain extent. Right, but what about when you need more immediate pain relief?
Speaker 3:Okay, the guide mentions topical treatments. What are those all about? Topical treatments are creams, lotions or patches that are applied directly to the skin where you're experiencing pain. Okay so they're working locally, not systemically like a pill you would swallow.
Speaker 2:Exactly.
Speaker 3:And there are several different types, each with its own way of tackling pain. So, for example, you have capsaicin cream, which is derived from chili peppers.
Speaker 2:Oh yeah, the stuff that makes your mouth burn Exactly. I'm guessing it doesn't feel quite the same on your skin, though.
Speaker 3:Well, no, not exactly. What it does is overstimulate the nerve receptors in the area you apply it.
Speaker 1:Okay.
Speaker 3:And it actually depletes a chemical called substance P, which is involved in transmitting pain signals.
Speaker 2:Interesting.
Speaker 3:So over time it can desensitize those nerves, making them less reactive to pain.
Speaker 2:So it's kind of like teaching your nerves to chill out a little bit In a way. Yes, yeah.
Speaker 3:Then you have CBD creams, which are gaining a lot of popularity these days.
Speaker 2:Yeah, CBD is everywhere now. What makes it good for pain management, specifically for CMT?
Speaker 3:Well, cbd interacts with the body's endocannabinoid system, okay, which plays a role in regulating things like pain, inflammation and even mood, so it can have a more widespread calming effect, which can be really helpful for those dealing with chronic pain.
Speaker 2:Interesting. Are there any other types of topical treatments that I should know about?
Speaker 3:There's menthol, which creates that cooling sensation. Right, it's more about masking the pain than actually addressing the underlying cause. Okay, but that temporary relief can be really welcome. And then there are lidocaine patches.
Speaker 2:Okay.
Speaker 3:Which actually numb the area where they're applied.
Speaker 2:So those are more about blocking the pain signals from reaching the brain.
Speaker 3:Yes, exactly.
Speaker 2:It seems like there's a topical solution for just about every preference Right Now. What about prescription medications? I know a lot of people with CMT rely on those for pain management.
Speaker 3:Absolutely, and the guide covers several different classes of medications. Okay, one common category is anticonvulsants, which were originally developed to treat seizures.
Speaker 2:Oh, really. So how do they help with CMT pain then?
Speaker 3:They work by calming down overactive nerves. For example, gabapentin, which is often prescribed for nerve pain, actually inhibits calcium influx in nerve terminals.
Speaker 2:Hold on, break that down. For me. What does that mean in plain English?
Speaker 3:Sure. Essentially, when a nerve is firing excessively, it's releasing a lot of neurotransmitters. Oh okay, those are the chemical messengers that carry signals between nerves. Right, calcium plays a key role in that release process. Okay, gabapentin basically blocks some of that calcium from entering the nerve terminal.
Speaker 2:Got it. Which reduces the release of those excitatory neurotransmitters.
Speaker 3:So it's like turning down the volume on those pain signals, and there are other anticonvulsants, like pregabalin, which work in similar ways. Then you have tricyclic antidepressants, which were initially developed for depression.
Speaker 2:Oh, interesting.
Speaker 3:But have been found to be effective for certain types of chronic pain.
Speaker 2:I've heard of those, but I never thought they would be used for pain. How do they?
Speaker 3:work for that. We don't fully understand all the mechanisms, yeah, but we know they affect certain neurotransmitters in the brain.
Speaker 2:Okay.
Speaker 3:Like serotonin and norepinephrine, which are involved in pain processing.
Speaker 2:Interesting. They also seem to enhance the body's own natural pain relieving systems. So it's not just about masking the pain but actually modulating how the brain interprets those signals.
Speaker 3:Yes, exactly.
Speaker 2:That's fascinating.
Speaker 3:And finally, you have muscle relaxants, like baclofen, okay, which are often prescribed for muscle spasms and stiffness that can accompany CMT.
Speaker 2:That makes sense. I know a lot of people with CMT struggle with tight muscles and cramping.
Speaker 3:Yes, and those can contribute significantly to overall pain levels. Yeah, muscle relaxants work by interfering with the signals that cause muscles to contract.
Speaker 2:Okay, so we've got topical treatments and prescription meds. What about supplements?
Speaker 3:Yeah.
Speaker 2:Can those play a role in managing CMT pain?
Speaker 3:They can. The guide goes into detail about several supplements that have shown promise.
Speaker 2:Oh, cool Like what.
Speaker 3:For example, acetyl L-carnitine is an amino acid. Okay, that's naturally found in the body and plays a role in energy production within cells, including nerve cells.
Speaker 2:So it's basically giving those nerve cells an energy boost.
Speaker 3:Yes, and that can help with nerve function and regeneration. Interesting, some studies have shown it can be helpful for reducing neuropathic pain. Okay, cool. Then you have alpha-lipoic acid, which is a powerful antioxidant. Remember we talked about inflammation earlier? Well, alpha-lipoic acid helps neutralize those harmful free radicals that contribute to inflammation and nerve damage.
Speaker 2:So it's like a shield for your nerves.
Speaker 3:Exactly. And then you have B vitamins, which are essential for nerve health.
Speaker 2:Okay.
Speaker 3:In fact, deficiencies in certain B vitamins, like B12, can actually cause nerve damage.
Speaker 2:Wow, I did not know that.
Speaker 3:So ensuring you're getting enough B vitamins, either through diet or supplementation, can help support those nerves and potentially reduce pain.
Speaker 2:I'm learning so much from this deep dive. It's amazing how interconnected everything is.
Speaker 3:It really is.
Speaker 2:Now the guide also talks about bracing and orthotics. How do those fit into the pain management picture?
Speaker 3:Well, think about the physical challenges of CMT, Things like foot drop, weakened ankles and those muscle imbalances we talked about. Bracing and orthotics provide support and stability.
Speaker 2:Okay.
Speaker 3:Which can make a big difference in terms of pain relief.
Speaker 2:So it's about correcting those biomechanical issues that contribute to pain.
Speaker 3:Exactly yeah, for example, ankle foot orthotics or AFOs are commonly used to address foot. Exactly yeah, for example, ankle foot orthotics or AFOs are commonly used to address foot drop. Okay, they help lift the foot and provide support during walking, reducing tripping and falls and also taking stress off the muscles and joints. Right Custom orthotics those shoe inserts that are molded to your feet can also help to redistribute pressure, improve alignment and support the arches, all of which can reduce pain.
Speaker 2:That makes a lot of sense, and I love that the guide encourages exploring holistic and alternative therapies as well. Tell me more about those.
Speaker 3:You know, pain management isn't just about addressing the physical symptoms.
Speaker 2:Right.
Speaker 3:It's also about supporting your overall well-being.
Speaker 2:I agree with that.
Speaker 3:Things like acupuncture, yoga, mindfulness. Even something as simple as a warm Epsom salt bath can be incredibly helpful for managing pain and stress.
Speaker 2:Yeah, it's about taking a holistic approach to your health.
Speaker 3:Right.
Speaker 2:Recognizing that the mind and body are interconnected.
Speaker 3:Exactly, and speaking of the mind, I think it's really important to address the mental health aspect of living with chronic pain.
Speaker 2:You're right, it's something that's often overlooked.
Speaker 3:Dealing with constant pain can take a toll on your emotional well-being.
Speaker 1:Yeah.
Speaker 3:It's not uncommon to experience anxiety, depression or feelings of isolation when you're constantly battling discomfort.
Speaker 2:Absolutely, and I would even say that emotional distress can actually amplify the perception of pain, creating a vicious cycle.
Speaker 3:Exactly, yeah, that's why seeking support is so important, whether it's talking to a therapist, joining a support group or practicing mindfulness techniques. Yeah, Taking care of your mental health is crucial for managing chronic pain effectively.
Speaker 2:It's about recognizing that you don't have to go through this alone.
Speaker 3:Exactly. And speaking of support, there's one resource we haven't mentioned yet that I think is absolutely invaluable for anyone living with CMT.
Speaker 2:Oh, tell me more. Oh, okay, I'm hooked. What is it?
Speaker 3:The CMT Summit.
Speaker 2:Okay.
Speaker 3:It's an annual event hosted by the HNF, bringing together people with CMT, their families, researchers, clinicians you know everyone who's passionate about improving the lives of those affected by this condition.
Speaker 2:It sounds like a really amazing opportunity to connect with other people who just get it it is, and it's not just about connecting, it's also about learning. Okay.
Speaker 3:They have presentations on the latest research and treatments, workshops on managing various aspects of CMT and even a whole retreat day dedicated to pain management and mobility aid testing.
Speaker 2:Hold on, you can actually try out different assistive devices there at the summit.
Speaker 3:Imagine being able to test drive different types of braces, orthotics, even wheelchairs, all in one place.
Speaker 2:Wow, with experts on hand to provide guidance, that's incredible. It can be so overwhelming trying to navigate all those things on your own.
Speaker 3:It can.
Speaker 2:So where and when is this year's summit happening?
Speaker 3:It's coming up soon, april 24th to the 26th, in Nashville, tennessee.
Speaker 2:Okay, I'm adding that to my calendar right now.
Speaker 3:Right.
Speaker 2:And I'm sure our listeners are too.
Speaker 3:Hopefully.
Speaker 2:Now, before we wrap up, I want to make sure everyone knows how to access all these resources that we've talked about.
Speaker 1:Okay.
Speaker 2:First and foremost, where can they get their hands on this ABCs of CMT pain management guide?
Speaker 3:It's available for free download on the HNF website, hnf-cureorg.
Speaker 2:All right.
Speaker 3:You can also purchase a hard copy on Amazon, if you prefer.
Speaker 2:Okay.
Speaker 3:And the proceeds go toward supporting HNX research and advocacy efforts. I love that. A win-win. And for those free CMT-friendly fitness classes, where should they go? Movementismedicinecom Easy enough it's a treasure trove of exercise videos specifically designed for people with CMT all completely free.
Speaker 2:Fantastic. And lastly, how can someone register for the CMT Summit?
Speaker 3:Easy Just visit cmtsummitorg. You can find all the details about the event schedule, speakers and registration information.
Speaker 2:Well, this has been such an enlightening deep dive into CMT pain management.
Speaker 3:Yeah, it has.
Speaker 2:We've really covered the spectrum, from diet and exercise to medications, alternative therapies and even this amazing CMT Summit. It's clear that, while pain is a common challenge for people with CMT, there are so many tools and resources available to help manage it and improve quality of life.
Speaker 3:Absolutely, and I think one of the most important takeaways from all of this is that you don't have to go through this alone.
Speaker 1:Right.
Speaker 3:There's a whole community out there, both online and in person, ready to offer support, encouragement and share experiences.
Speaker 2:So true knowledge is power and feeling connected is invaluable.
Speaker 3:What's fascinating here is that, despite the challenges, there's a real sense of hope and progress in the CMT community.
Speaker 2:Yeah.
Speaker 3:Research is advancing, new treatments are emerging and there's a growing awareness of the importance of comprehensive pain management strategies.
Speaker 2:I'm so glad you brought that up. Sometimes it's easy to get caught up in the day-to-day struggles.
Speaker 3:It is.
Speaker 2:But it's essential to remember that things are changing and the future is looking brighter for people with CMT.
Speaker 3:It really is, and everyone who gets involved, whether it's by attending events like the summit, supporting organizations like the HNF, or simply sharing information and resources with others, contributes to that progress.
Speaker 2:Beautifully said To everyone listening. Thank you for joining us on this deep dive into CMT pain management. We hope you feel more informed, empowered and hopeful about your journey.
Speaker 3:And remember this is a marathon, not a sprint. There will be ups and downs, but with the right knowledge, support and self-care practices, you can absolutely live a full and meaningful life with CMT.
Speaker 2:Until next time, stay informed, stay connected and keep advocating for yourself and for a brighter future.
Speaker 1:Thank you for listening to CMT Simplified. To learn more about HNF and 2025 Summit, visit hnf-cureorg. Join CMT families around the world, creating impact that matters.