Ask the Mito Doc – April 2025 Q&A
All answers today are based on personal experience of the participants. As always, please consult your personal physician prior to taking any action.
Ask the Mito Doc – April 2025: Integrating Physical and Emotional Pain Management in Mitochondrial Disease Care
Materials referenced in the talk for download:
Clinicians:
· Gail Reiner, DNP, FNP-C, University of California San Diego
· Richard Haas, MD, University of California San Diego
· Jennifer Yang, MD, Rady Children’s Hospital San Diego
Q: I get full body pain (like aches from the flu) and migraines whenever I “overexert.” However, even doing something simple like going to church can lead to this “overexertion” and pain. Is there any way to prevent this from happening?
A: Gail Reiner, DNP, FNP-C: I suggest Epsom salt baths. Sometimes alternating heat and ice, but you have to be careful not to do more than 20 min of ice. But if it’s total body, you’re not going to go in an ice bath, so that’s really more for a localized pain. An Epsom salt bath can be very good, and sometimes a magnesium supplement like (the brand) Calm that you can dose, between a half to 2 teaspoons can be helpful. Also apple cider vinegar. So again, those are very old home remedies, but some patients do report those simple things are effective.
Q: I have two questions: 1) I get head to toe body aches on a regular basis (it’s the kind of body aches you get when you have a fever, but I don’t have a fever). Is that typical from Mitochondrial disease, and any suggestions on how to control? 2) I find that that I get sick very easily, and when I do, it takes longer to shake it than the average person. Is that also typical of Mitochondrial disease and how can I control?
A: Gail Reiner, DNP, FNP-C: I think one thing is really making a note and observing because that’s the difficult thing. Sometimes simple tasks, but because that promotes less mobility, it’s going to become a vicious cycle in some cases. And this is where I do recommend physical therapy evaluation because they’re very good at looking at, assessing and reporting back on muscle strength and endurance issues, and then coming up and collaborating with the neurologist or the specialist on what the best approach is.
A: Richard Haas, MD: Creatine in low doses is known to be helpful for some patients with mitochondrial myopathy, particularly mitochondrial DNA causes. And so it’s often worth trying, and a lot of our patients are taking Creatine. The dose is just 5 grams a day. That’s a teaspoonful. The other thing is, when you started out you talked about physicians not appreciating basically that the patient’s had pain, and that’s because we see them in a static setting, really just in the examining room, and most of the patients who have muscle disease have exercise intolerance, and they have pain if they really push themselves too hard. On the other hand, they need to work up their exercise capability. We don’t have any approved treatments for mitochondrial disease at the moment. But one thing that we do know is helpful for the body as a whole as well as the psyche and muscle disease, is an exercise program. It needs to be measured. And I tell patients to push themselves as far as they can without hurting themselves, so they need to be comfortable doing what they’re doing, but gradually work up their exercise capability, because that actually is the best treatment, truly, that we have at the moment.
We have a protocol Pdf file that we share with our patients that came from Vancouver, British Columbia with input from Dr. Mark Tarnapolsky, who’s one of our real exercise experts with mitochondrial disease and that can be helpful in guiding physical therapists to help the patient work out an exercise program, and Gail says physical therapy is important. It is.
A: Jennifer Yang, MD: And even if it’s not a lot of exertion it’s still a change from your regular activity, because you are your own baseline. So making sure that you hydrate and have some electrolyte fluids before a planned activity to build that up before you do the activity.
Q: What are your recommendations for intractable migraines during stroke like episodes? Pain clinic is involved and headache/neurology, too.
A: Jennifer Yang, MD: So the treatment for status migrainosus, or on the spectrum of a really severe migraine attack, which certainly can come on when there’s a lot of stress, stroke or post seizure, or any of that sort. There’s a couple of things where we recommend avoiding or using with caution, or not using at all, which is depakote or valproic acid, which is sometimes used in the acute status migrainosus pathway. So we have that in our emergency letter to definitely try not to use that, because there are many other options, like a migraine cocktail, which usually is some IV fluids. Sometimes IV, Mag. IV, Toradol, and then Benadryl as well, is in our cocktail. We can try that. And then, if it’s really refractory, to move on to the next agent, the newer classes of migraine medication, the Cgrp inhibitors. They come in different forms; there are tablet forms, there are injectables. They all modulate the similar pain receptor. That’s been working really well for some of my patients who have really bad migraines prior to the approval of the cost of Cgrp inhibitors, and some of them are approved for acute use, and some are approved for preventative use, and some people may need both. Because they work differently if one doesn’t work as well you can try another mechanism for modulating the Cgrp. So that’s what I’ve been using more recently for some of my patients, and then the ones who are quite refractory I’ll send them over to headache medicine. If you have the advantage of having a center like that with Botox injection, you know there’s no kind of acute neuromuscular concern can be helpful, because it’s just kind of local muscle injections every couple of months. So it’s not a systemic ingestion of a medication. So if you’re worried about that, then that’s a good option. And then there’s also some newer approved devices now that are neuromodulatory, I don’t even know all of them. There’s a couple of ones that you wear like a headband and put it over the area where you have an affected migraine. And again, it’s not taking a pill or not having an infusion. It’s sort of just a local pain modulation. So that’s another option.
Q: How can a mito patient find a doctor to help them with pain management when some of the doctors, that may even be treating them, don’t even believe it exists. How do they go about that? What steps do you think they should take?
A: Gail Reiner, DNP, FNP-C: If you’re in pain, and your primary doesn’t believe you, you probably need to find another primary. I sent references as well, documenting the reality of pain in some mitochondrial patients. It is very unusual for a patient to be able to self-refer to pain management. So it is critical to have either the consultative, neurometabolic specialist or a provider that does believe you.
A: Richard Haas, MD: I was just going to say that Gail is my go to person. So we’re incredibly lucky to have her available to help our patients with mostly chronic pain, I mean acute pain. Most physicians know how to deal with it, and that happens after surgery and other situations where it results. As Gail pointed out, the patients with more chronic pain, particularly neuropathic pain, are very difficult for us to deal with, and Gail’s approach to this has proven to be very helpful so I think we’re in a fortunate position.
A: Jennifer Yang, MD: I (think) most physicians are in it to help patients. Some have better bedside manners than others, but I wouldn’t approach it with the assumption that your physician does not want to help. I think sometimes they may not know how to help. So like, Gail said it’s a two-way street. If you could provide some education material to say, Hey, I attended this webinar here are some resources I’ve learned about, biological and the mitochondrial kind of etiology of pain, what do you think? Is there anything that you know we could work together that you think would apply to me? And then see what the response is, and the response may surprise you.
Q: What’s the best way to manage chronic constipation due to pain medication, other than the expensive prescription drugs such as Movantik.
A: Gail Reiner, DNP, FNP-C: Just as there’s actually no ceiling on opiates, sedation will always precede respiratory depression. So if somebody is awake, alert and able to function, even if they’ve had escalating opiates, you have to escalate the bowel program along with it. So this is where it’s really important for the provider to understand the different mechanisms by which bowel program elements work. So Miralax and Lactulose are common things that draw water into the bowel can very help be very helpful at bulking stool. But opiates really slow the gut down, and the longer poop is in the bowel, the drier it gets, and that will actually sometimes cause irritated Bowel. And people think, Oh, I’m pooping because I get a little Hershey squirts diarrhea, so I think it’s really important at that point to have some kind of a stimulant. And Senna is vegetable based. If you want to start with very natural things. Warm prune juice, dried fruits, Smooth Move tea by Traditional Medicinals, which is a Senna based tea with licorice and other herbals. But basically you have to dose to benefit and the goal is to have one soft stool a day, or at least every 2 days, and if somebody or a child starts pooping like a goat, you know just little pellets they need to up their bowel program. There’s a scale that people can look up called the Bristol Stool scale that can help them to understand if they’re stooling normally.
A: Jennifer Yang, MD: I agree, especially in younger kids, from my experience from a pediatrician standpoint. If you see alternating harder stools and softer stools it’s still likely that it’s overall more slow motility, and it’s overall constipation. And so the intuition, if you’re seeing loose stools, is to pull back (on medicinals). But actually, you should increase it, and occasional bowel cleanouts may be necessary, especially if there’s a period of time where you have more medication induced constipation. But we do try to pull back if it’s a temporary situation as soon as we can, to avoid those complications.
A: Richard Haas, MD: What I would add is that mitochondrial diseases are multi-organ system disorders, as we know, and the gut is very commonly involved. So it’s really frequently the case that our patients have either delayed emptying of the stomach, sometimes is real paralysis, gastroparesis, but also constipation and diarrhea and Irritable bowel symptoms. So we do try to manage those symptoms when we see our patients, but we often have to involve GI specialists as well, and they’re a little bit hard to come by because we need motility experts to really help some of the patients. So this is a common problem.
A: Gail Reiner, DNP, FNP-C: The last thing I want to say is sometimes I will assess objectively, especially if it’s a low to nonverbal patient, whether it’s a child or as an adult, and that’s to do a flat plate abdomen X-ray just for stool burden. And that is one quick way of getting an objective assessment.
Q: How can we tell if our young child that is nonverbal is experiencing pain with their signs, and things that people might look for in their in their kids, so that they’ll know if they are in pain or not?
A: Gail Reiner, DNP, FNP-C: Thank you for asking that, I really appreciate this topic. I have a patient right now that is in that category. I think it’s important, because again, the treatments, for example, Gabapentin versus Pregabalin can be carefully thought through so that the right treatment matches the reason for the pain. The first thing I look at is their face because if they scrunch their face up and they look uncomfortable, they probably are if they’ve never been verbal. That is more likely a sign of discomfort of some type. You have to go through thinking about any child like you would a baby: Are they constipated? Have they eaten? Do they have enough fluids? Are they thirsty? So first you have to rule out whether or not there’s any interference with basic human needs and then, in addition to the face, if there’s kind of a curling up into oneself, the respiratory or the breathing rate is faster, the heart rate is increased – those can all be potential signs of discomfort. But just like with any medical problem, sometimes what we’ll do is try a little bit of Tylenol, try a little bit of ibuprofen. If there’s no allergy to those medicines, and if they seem more relaxed and look more comfortable, they probably are. So erring on the side of treatment with fairly benign medications, can be helpful in making that determination as well, but also working with your provider to see if there is a possible cause of discomfort is super important. I know Dr. Haas and Dr. Yang are very vigilant, for example, with our wheelchair dependent patients in thinking about bone density, and whether they’re increased risk for fracture over time. And also thinking about if it’s somebody with mobility issues or more or any sign of injury we have to have a higher index of suspicion that there could be a physical reason for pain resulting from an injury that happened.
Richard Haas, MD: Really good information. We’re both pediatricians. So we’re pretty used to the idea of trying to decide if a child has pain, and Gail has covered it, I think. But the other thing that we do and so does scale is we do check them out to make sure there’s nothing simple happening like a urinary tract infection, or an ear infection or tonsillitis. You know common things happen commonly, so you need to make sure that if this is a 1 time or a new thing, that you’re not dealing with something like that as well.