PODCAST INTRO: One thing I've learned is rest is medicine, and I even wear a monitor now called Visible to track how much energy I'm truly using. Even if I think I'm taking it easy, it shows me that I might be expending too much energy, and I'm able to take rest breaks purposely so I don't feel guilty about resting.
Hey, beautiful soul, and welcome to Dear Body, I'm Listening. The podcast for women navigating chronic symptoms, invisible illness and that daily dance between hope and exhaustion. If you've ever been told it's all in your head. Well, this podcast is for you, because your body is not lying and neither are you.
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Donna Piper: Hi, I'm Donna Piper, movement therapist, Pilate instructor and chronic illness navigator. After years of being dismissed, misdiagnosed and doing everything, quote unquote, right, but still getting sicker, I created this space to tell our truth. Here we talk about swelling, brain fog, nervous system crashes, and the kind of symptoms that don't always show up on lab results. We're going to explore lymph, breath, movement, self trust, latest research books, relationships, basically everything, all from a place of compassion and honesty. This isn't about fixing your body. It's about finally being heard and getting some answers.
Episode 4: MECFS, so basically chronic fatigue, huh? Is that even real? So welcome back everyone to this episode of Dear Body, I'm listening. I'm Donna. And again, if you're running on 30% and pretending you're running on 100%, welcome. You are not alone here. And today, we are talking about chronic physique syndrome. What is it? Is it even real? And here's what my real talk recap is about. This is back in January. I met with a doctor in Los Angeles. His name is Dr. Perrin, and he completely changed the game for me. He was the first person I met to tell me that what I had was also within everything else that I came in with was MECFS. And to be honest, it wasn't even on my radar. I hadn't even considered it. I had heard it before. I think I've had clients that have had it, but I didn't think that I had it. I really thought, okay, it's been a little over a year since I had my diagnosis with the lipedema, MCAS and EDS, hypermobility, POTS.
I was just going to him because he was referred to me. He was going to be in town. He's a world renowned doctor from the UK, and I knew he did lymphatic work, and he did some stuff with the body to help heal it, but I wasn't quite sure. I hadn't read anything about him. Someone told me to go, so I signed up to see him, and I really was thinking like he was just gonna give me some more information about how to better deal with what I currently have. And sure, I'd had crushing fatigue. And some days, I could barely stand and do the dishes without needing to lie back down. And constant brain fog and this awful exhaustion where I felt tired and I couldn't do anything. I felt guilty for not doing anything, but I couldn't do anything at all, and nothing would help. No coffee, no green juice, no supplements, no cold plunge, or anything ever fixed it. And I had no idea it could be this. I had pneumonia, so they told me it was viral and they said that it takes time. I thought maybe it was that, or just sometimes I'd push myself a lot. I had no idea that the real culprit was pushing myself a lot, having a virus and having all these other elements in place that when that virus came, that knocked my system out, and I really just had to rest.
Dr. Perin looked at my lymphatic system, my cranial rhythm, and did his five physical tests and said, your body isn't detoxing properly, and it's overwhelming your nervous system. My lymph was going in the wrong direction, and my hypothalamus and my central nervous system to tell your body how to detox weren't connected. And so it made total sense what he was telling me, and had never been told that before. No other doctors have told me this when I came in with any sort of problems, and none of them mentioned it was my lymph, my spine, or my cranial flow. So since that appointment in January, we were moving from Los Angeles to Newport Beach, and it just happened.
One of the references they gave me from that meeting that day was a woman that went through their training that previous weekend, and she's already a lymphatic manual, lymph drainage, MLD. She did that. She has a lot of patients. She sees post op and with lipedema or lymphedema, and it just so happened she did house calls down in Orange County. So her name is Tina, and she is amazing. I've been working with her every week since February in the Perrin Technique. So because I'm functioning about a 3 out of 10 on an energy scale, I am also managing lymphedema, MCAS, and hypermobility with EDS. So this is a longer, deeper healing journey.
So for me, it looks like weekly sessions once a week for six months. And probably weekly sessions ongoing since I also want to prepare myself to get surgery. And he has some videos that I'll link, and I'll talk about it a little further in the show, but I do his regimen every night as well. In addition to having someone come and do the work on me, I likely have a three year total recovery plan. I'm constantly working to restore balance in my lymphatic and nervous system, and honestly been really life changing.
Okay, segment two, let's talk about the Perrin Technique and why it matters. If you have me or chronic fatigue syndrome, you might suspect you do, or he's even done similar research with long COVID. So if you're a long COVID person out there too, this information will help you. So ME/CFS stands for Myalgic Encephalomyelitis. I totally botched that up. I've tried to get the pronunciation back and forth with Google. That's the best that I can. It'll be written in the show notes, /Chronic Fatigue Syndrome. No, it's not just being tired. It's energy crashes. It's not refreshing sleep, brain fog, post external malaise, which is when even small tasks cause symptoms. So you do something, and then you get like this, you get really tired, and you get all these weird symptoms. Maybe you went to the grocery store, or you stood up and cleaned your kitchen, and cooked one day, and then sometimes it feels like intense pain. You could have flu-like fatigue, or hypersensitive to sound or light. It often begins in adolescence or early adulthood, and is far more common in women.
Reading his book and doing that for me, I always had tonsillitis and strep throat. But when I lived in Las Vegas growing up, you had to get the strep throat within one calendar year three times. I'd always miss it like something, or maybe it was like tonsillitis and not strep. So I ended up getting my tonsils out in my 30s. So that also is probably a contribution to it. And then when I was younger, I wasn't even thinking about these big crashes that I had or feel really tired. I was dancing a lot. I was in my master's program. I was seeing tons of clients. I didn't even think about it like it would be something else other than, oh, my gosh. I just think I get really tired after I do a lot of energy. So let's go back to what his theory is, and I'll link to all of his books and his website. But ME chronic fatigue syndrome isn't psychological. It's structural. So it's not just you're tired or you're not sure like, oh, it's actually a physiological thing happening that's not actually working right.
And according to Dr. Perrin, blocked or sluggish lymphatic drainage in the brain and the spine causes toxic buildup. This overload stimulates the sympathetic nervous system, your fight or flight mode which keeps you stuck in survival and that causes those deep, mysterious crashes. He even found elevated chlorine in the brain of ME/CFS patients, which points to neurotoxic accumulation. And what he checks for in his is when your initial consults is upper neck and back tension, so there's a straightness of your thoracic spine, swollen lymphatic vessels, especially near the chest, tenderness at the third rib on the left side, the upper, and then also celiac plexus sensitivity in the upper abdomen and diminished cranial rhythm, which is osteopaths can actually feel. He's an osteopath. And if you're a therapist and different cranial sacral, they actually train to feel these rhythms.
I thought I was going into this appointment, and when we were talking about chronic fatigue, I was like, I'm not gonna have any of that. I had every single one of those. And these aren't vague or made up signs. They are consistent physical markers that he uses to support his diagnosis after a lot of written symptoms. So it's quite extensive to go through this just initial assessment, but is well worth it.
So what actually goes on with these resets? So you want to reset your hypothalamus and your autonomic system, so that's what his Perrin Technique is. It works by manually clearing the lymph around the brain, especially at the neck and the plate back here. So if you're just listening to me, I'm pointing to the lower back of my skull, and also to detox the central nervous system. It also helps to rebalance the hypothalamus, and that's the brains and master regulator of energy, hormones and stress responses. When the lymph starts flowing again and the nervous system can finally exhale, the healing becomes possible. So rest is a huge part of what is prescription. He does half of what you think you can in your perceived exertion. Because the more you push yourself, then it just takes longer that your body is trying to detox. It has all this stuff in it that it can't get out because it's going the wrong way. Things aren't talking. So when you push more and fatigue yourself, you're just creating longer and longer time until you can be healed.
All of his books are wonderful reads. Some of it could be. So there's a smaller primer for it and a larger book if you want to know all the science. And if you know anyone that has long COVID, it's worth a read, or to search Perrin Technique practitioners in your area. I know he does training worldwide, and I'll link the links to his books below.
New segment, ask Donna Segment. So I've been asked by some friends and some clients, what does my weekly parent session feel like? So it is very gentle and deceptively powerful. So Tina, who is my amazing therapist. She comes, and she starts by checking my posture, my spine and the rhythm of my cranial fluid. And then she gets into the manual lymph drainage, the cranial balancing and spinal mobilization. So some weeks after she's done, I need a full day of rest right after. And then the next day, I might have headaches. And other times, I feel you are clear headed and energized. So as those times have been going on, I've noticed that my energy increases after our sessions other than diminishes. I have more energy to do regular household things because you haven't chronic fatigue seriously doing laundry, making a meal. And because I have lymphedema mast cells and hypermobility POTS, all these things, it's very hard to take care of myself.
I really need to make sure that I rest enough, and the rest is medicine. That's one thing I've really learned. And to really like, okay, I'm gonna rest. Not feel guilty. Not feeling like I should be doing something else. But really, learn to totally rest. And I have an arm band that's called Visible, and it comes with an app, and that also helps with chronic fatigue. To help you know what you might think something is kind of benign, but it's taking a lot of your energy. So the more you kind of know how to regulate your energy and begin to breathe and take a break so you don't end up doing crashes, so your body gets better. That has been a wonderful tool. I'll also link down to that in the show notes. And one thing I've learned is rest is medicine, and I even wear a monitor now called Visible, to track how much energy I'm truly using, even if I think I'm taking it easy, it shows me that I might be expending too much energy, and I'm able to take rest breaks purposely so I don't feel guilty about resting.
Okay, last segment. I feel good. Flow time. So let's do one of my favorite nervous system resets, especially during a flare up or low energy day, and that is feet up the wall. This is so simple, and it works wonders for your lymphatic flow and calming the nervous system. So all you have to do is lie on your back near a wall, or it could be on your bed with your feet up your headboard, or it could be on a couch over something. Ideally, you want the feet up too. At somewhere where your body is down and your legs are elevated above your head, and you want to scoot your hips as close as you can to the wall to extend the legs up so they rest against it. So that's ideal. But if you can't scooch all the way to the wall, or you have pillows in the way or whatever, just get those feet elevated and they're resting. Then you just place your arms by your side and rest your hands at your belly, whatever is most comfortable. Close your eyes and breathe. So it's really good to breathe. Practice what I like to call a triangle breath. I learned this from a PT Melissa.
She specializes in working with EDS, and I'll leave a link to her programs, but she uses a triangle breath. So you inhale for four, and say you exhale for eight or something where your breath can handle it. So whatever breathing you can do. But basically, you inhale for a short amount of time, filling up your belly. And then as you exhale, you try to slow that down as slow as you can by pulling your abdominal muscles in. So deep belly breaths help with the deep lymph that goes underneath, your system along the spine that pushes things back up. So we're going to talk about all this stuff and break it down in future episodes, because there's so much to talk about. But just start here. Just start to deep breathe. That helps for lipedema. It helps for a mast cell. It helps for EDS. It helps for POTS, and it helps for chronic fatigue. And you could stay here for 5 to 15 minutes, however long you feel. You could do it multiple times a day, whatever you like. And it does help reverse that flow, put that flow in the right thing to help it drain, and it does give a lot of clarity and calming so these are some of the key points of this pose. It encourages lymph drainage, it eases lower back tension. It calms your vagus nerve, and it helps you reconnect with your body. And a bonus tip for this, use this after you go to appointments or you've done a lot of mental energy, long car rides or days when your system feels overwhelmed. I will leave the links.
If this episode made you feel even more seen, brought you clarity or reminded you that you're not alone, please take a moment to rate, review and send it to someone who needs that same reminder. You can find more tools, blog posts and support over at donnapiper.com. And hey, don't forget to subscribe so you never miss an episode. Got a question for me every month. I do a listener coaching episode, and I'd love to hear from you. Send your questions, stories, or flare up confessions to [email protected], and you just might hear your answer on the show. Until next time, Dear Body, I'm listening. I am so glad that you are here.
