Practical guide to pacing and managing Post Exertional Malaise (PEM)

Melanie Hoppers (54:17): And that's not

Emily Kate Stephens (54:19): To say that physicians like you are not validating patients, but just to have that on a day to day basis, not only once every six months when you see a physician, is huge.

Melanie Hoppers (54:30): Well, I mean, people who have this disorder, I see them gaslighting themselves, and it's because they're being gaslit every day by peers and family, and unfortunately, healthcare, and so they start to doubt what they think. They start to not trust their instincts, and this helps them get that back.

Emily Kate Stephens (54:52): Yeah,

Melanie Hoppers (54:52): And so it helps with that, and again, that feedback. And also, here's another thing: if you can start to recognise, like you. That HRV dropping now-that's a cue to you. What am I feeling? You may be surprised and go, "Oh, it's causing this or that symptom. This isn't what I thought going into PEM would feel like. Now I have another clue. And I was on a hike with someone who has post-exertional malaise, and they said, "I need to go back to the car. And are you okay? Is your heart rate? No, my teeth hurt. Your teeth hurt. Okay. Then we did this whole conversation, and then I started asking my patients, "Do your teeth ever hurt when you're in post-exertional malaise? It was not. It was more yes. Yeah, it was not uncommon to hear. At least in the five or six that I asked, about half said, "Oh yeah, I do that, or "My tongue hurts, or something mouth related. It was really interesting. So just start. You can use that and go. Okay, here's my numbers. I'm going to start slowing down now. But what am I feeling right now with this low number or this number that's not optimal?

Emily Kate Stephens (55:58): And I think that's an interesting point to make because sometimes that HRV reduction is considerably prior to the real symptom exacerbation. So if you can notice that the HRV is dropping before you get into the real depths of the crash,

Melanie Hoppers (56:17): Right?

Emily Kate Stephens (56:17): Do you find that patients are then possibly able to bring themselves back before they fully enter PEM.

Melanie Hoppers (56:25): I think it's possible. Depends again sometimes on how severe they are. If they're very, you know, if they're severe, it's a little bit harder. If they're more mild, and depends again on how much they rest. If they go all in, they're able to take the day off and just really spend at home, kind of sitting on the couch, lying on the couch. There's so many variables; it's hard to say. But yes, in some instances, for sure. And if nothing else can lessen it.

Emily Kate Stephens (56:51): Are there any other things that you'd like to share with people when it comes to really trying to get a handle on this idea of pacing and avoiding PEM?

Melanie Hoppers (57:01): Yes, healthy eating is very important. And people, what kind of diet? Well, to start a healthy diet, just a healthy diet, heavy with fruits and vegetables, organic, wash them. All the chemicals that our foods are sprayed with. You know, you want to. There's, and I won't go into it because I can't really remember now. But I, if you do a Google search of which foods are most likely to have pesticides, there's like a list of 10, and you can figure out. Okay, so maybe I want to avoid those and go more with these. But try to be healthy when you're experiencing PEM or going into PEM. Even this, I mean, digestion takes up energy, right? So do things that maybe are a little more easily digestible that you don't have to chew so vigorously. If you're severe, chewing can be difficult. Swallowing can be difficult, so you want things that are easier to swallow, things that are easier to eat, soft foods, things like that. Don't eat spicy foods in PEM. It's just more things for your body to experience the sensations, etc. So healthy habits, controlling your triggers for like if you have MCAS can trigger PEM. So you want to try to avoid your triggers, try to identify your triggers. And again, sometimes I say things and think, oh boy, that's a hard thing. But I'm going to ask you to try to do it is to try to reduce your stress level. Stress when you have stress, your body releases cortisol. Mast cells have a receptor for cortisol-releasing hormones. So when you're in stress, you activate your mast cells, which can activate and worsen your POTS. So you can see the spiral that can occur that can lead to PEM. So trying to do things like that are healthy. Focus on you. Do the things that are healthy for you. Do the things that keep your peace, and that can be very helpful.

Emily Kate Stephens (58:50): Okay. In an ideal world, there are all many things that some people will say that these are really not options for me, but I just want to reiterate: you're saying do as much of them as you can to try and get your body back to some sort of homeostasis.

Melanie Hoppers (59:12): Right, right,

Emily Kate Stephens (59:14): And hopefully, the more of these strategies that you can implement in the immediate term, it can enhance things in the long term. So we're talking about instead of living for the rest of your life with this severe situation, perhaps implementing some of these strategies now might enable sooner,

Melanie Hoppers (59:39): Right,

Emily Kate Stephens (59:39): For your life to be improved,

Melanie Hoppers (59:44): And again, sooner to have some control, for you to control, not it to control you. And let me say though, too, sometimes this disease is cruel, and you can do all the right things. So I don't want anyone to feel like if I'm they. Like they're doing all the right things. That's a failure on their part. Sometimes this disease is just cruel. But if there's any way to enlist other people to help you to figure out those things, like with OT, that can be helpful.

Emily Kate Stephens (1:00:13): Doctor Melanie, this has been such a pleasure. I feel like we've only scratched the surface of your knowledge and your clinical experience and your experience as a mother, but I hope that what we have given to people is a little bit of a guide of how you can start. And I guess the biggest thing for us to say is do check out the resources to the Bateman Horne Center because it is a remarkable organisation, and the primary function is to help people to drive this forward. So,

Melanie Hoppers (1:00:53): Absolutely,

Emily Kate Stephens (1:00:54): Thank you so much, Dr. Melanie.

Melanie Hoppers (1:00:56): Thank you so much.

Emily Kate Stephens (1:01:03): So you, my listener, if this conversation was helpful to you, and I think it's so packed with ideas and tips and genuine lived experience, if it rang true, if there are nuggets in there, please can you go and share it with someone for whom it might actually make a difference to their day, for whom it might make a difference to their illness and their life, it would be really, really appreciated. Because actually, what people like Dr. Melanie are trying to do is help as many people as possible, and by creating these podcasts, by creating these episodes, we're trying to spread that information more widely than a single individual or centre can do. The Bateman Horne Center is an absolutely phenomenal resource. Check out the show notes for links. But if we can play a part in sharing their knowledge and spreading the understanding of these conditions with this podcast, we are helping not only them as an education centre, but we're impacting the lives of people with complex illness. This conversation was actually prompted by a listener who responded to our Rob Wüst episode 17, which delved into the scientific understanding of post-exertional malaise, asking what we are supposed to do about it. I say this is the first in what will be multiple conversations from different practitioners to really try and give you the tools to pace and make steps towards understanding what you can do on a daily basis to try and alleviate your symptoms and regain some control over your illness. So please share this episode, review it, leave a rating, give me feedback, engage with us, so that the information here has the greatest impact, the greatest reach, and we will continue to bring you the brightest voices in this field. Thank you for listening to Make Visible. Please do like, follow, or subscribe to listen to our next episode, where we'll be uncovering more insights into complex chronic illness. This was brought to you by the team at Visible, a group of scientists and engineers whose lives have been affected by energy-limiting health conditions. We're building wearable technology that's helping 100,000 people measure and manage their complex chronic illness. To find out more about what we're working on and how Visible could help you, visit our website at makevisible.com.

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