Managing Mast Cell Pain with Linda Bluestein, MD

[00:32] Dr. Linda Bluestein: Pain is a subjective experience. It's only experienced by the person in pain. A lot of times people will say, my doctor didn't validate how much pain I'm in. And I would like for us to all experience the fact that we don't need them to do that. They can't possibly understand the pain that we're in.
[00:56] I think sometimes people are thinking that they're going to validate it and then they don't. And of course you need them to do the proper workup and evaluation and all of those kinds of things. But only you are experiencing the amount of pain that you're in, not your family members, nobody else. It is a subjective experience. Only you are experiencing it.

[01:26] Jennifer Milner: Welcome back to the Bendy Bodies Podcast, where we strive to improve well-being, enhance performance, and optimize career longevity for every bendy body. This is co-host Jennifer Milner here with the Hypermobility MD, Dr. Linda Bluestein. We are so glad that you are here to learn tips for living your best bendy life. This information is for educational purposes only and is not a substitute for medical advice.
[01:51] Our guest today is our very own Dr. Linda Bluestein. Hello and welcome to Bendy Bodies.

[01:57] Dr. Linda Bluestein: Hello.

[02:00] Jennifer Milner: I know it's weird to say hi to ourselves, right?

[02:02] Dr. Linda Bluestein: Right, right. Exactly.

[02:04] Jennifer Milner: Well, this is our third year in the podcast. I've interviewed you a few times, tapping into your expertise, but for those of the listeners out there who may know you as the founder of Bendy Bodies, but may not know your background before that, can you tell everybody a little bit about yourself and where you come from?

[02:23] Dr. Linda Bluestein: Sure. So I grew up as a ballet dancer, really wanting a professional career, but that didn't pan out. So my plan B was to go into medicine. And I practiced as an anesthesiologist for a number of years before my own medical problems caused me to have to come up with a Plan C, I guess, if you will.
[02:41] And because I had been spending so much time and energy studying about Ehlers-Danlos syndrome and related disorders, I decided what I had learned had really worked very well on me. And I had a lot of people encouraging me to open a practice specializing in treating pain, because pain management is something that you learn as an anesthesiologist. And I did have a pain practice when I first finished my anesthesia residency. So I had people that were really encouraging me to open a practice to treat people with persistent pain.
[03:13] So I did that. And then fairly early on, I met somebody who really encouraged me to start a podcast. I started a first podcast, and that was going really well, but I really wanted to reach people at a younger stage and age. And I thought, where is a better community than the dance community and the aesthetic athletes — really catching them before they're having a lot of problems and hopefully providing them with information. Podcasting, I feel like, is such a great way to do that.
[03:42] So I was super excited when you jumped on board, and we've gotten obviously really great feedback from people — a lot of aha moments that we hear about. So yeah, that's basically it.

[03:53] Jennifer Milner: So we are going to tap into your knowledge on pain and management as we talk today about mast cell disorders. So let's start this off with — what exactly is, or are, mast cell disorders?

[04:08] Dr. Linda Bluestein: Sure. So mast cells are immune cells that are present in connective tissues all throughout the body. And what happens is mast cells can get activated and degranulate. And when that happens, they modify various different aspects of bodily physiology and pathology. And mast cells are very important for a number of normal physiologic functions. For example, they're involved in innate and adaptive immunity. They're involved in vasodilation — or the status of blood vessels, how vasodilated or how constricted they are. So that's how they can be influential in potentially symptoms like we would see with dysautonomia.
[04:46] And then there's other conditions that mast cells are involved with. For example, we see mast cells in conditions like allergy, asthma, anaphylaxis, gastrointestinal disorders. We can see them involved in malignancies and cardiovascular disease.
[05:02] The prevalence of mast cell disorders is really unknown. And so we know that there are some very specific findings — for example, unexplained flushing, people saying that they feel really hot, a lot of times with abdominal pain and bloating. We'll get a little bit into that later. But sometimes when people have a lot of reactions to foods or medications, they may get flu-like symptoms or react to insect stings. These are some of the things that we can see with mast cell disorders.
[05:30] And some of the most well-known mast cell conditions are mastocytosis. Now, that does not account for the majority of cases, but that can be a variety of different conditions. There's several different types, like systemic mastocytosis, where there can be a problem actually in the bone marrow and you can have too many mast cells. And then there's mast cell activation syndrome, where the number of mast cells is normal, but they activate too easily and release these mediators and cause problems all throughout the body.
[06:00] And then there's something else called hereditary alpha-tryptasemia, where you have an extra copy of the alpha-tryptase gene and you have higher levels than normal of tryptase in the blood. And those people actually can end up with a clinical picture that looks just like hypermobile EDS, dysautonomia, and mast cell activation syndrome. So if a person gets elevations of tryptase, it can be a good idea — especially if you're Caucasian, because this can be more common in Caucasians — to get the genetic testing for hereditary alpha-tryptasemia to see if you have that extra copy, because then that can be a confirmatory diagnosis and can explain a combination of all of those symptoms.

[06:48] Jennifer Milner: That's so interesting. So you're saying this one specific diagnosis could actually cover what we have sort of parsed out into three different diagnoses until now? That's so interesting.
[06:59] And what a broad spectrum mast cells can affect, right? I mean, usually when I think of mast cell disorders, I think of the sneezing, the hives, the flushing, the food sensitivities. Those are the things that I instinctively think of — like your body is just allergic to the world.

[07:21] Dr. Linda Bluestein: Yeah, right. It can be, for some people, for sure.

[07:26] Jennifer Milner: So it's interesting that it can cover such a broad variety of things and affect your body in so many different ways. So why would hypermobile people be particularly interested, or why should they be aware of mast cell diseases?

[07:39] Dr. Linda Bluestein: So whether a person has hereditary alpha-tryptasemia or not, we know that there is a significant amount of overlap between these various conditions. We know that people who have hypermobility are more likely to have mast cell disorders, and we know that people who have mast cell disorders are more likely to have hypermobility. So we know that these things travel together. We don't know why, though.
[08:03] For one thing, we don't know the true prevalence of hypermobile EDS. We don't know the true prevalence of hypermobility spectrum disorders, and we certainly don't know the true prevalence of mast cell disorders. There's some evidence that it might be quite high. There's a study that was done in Germany where I believe the figure was 17% of people were somewhere on the spectrum of mast cell disorders. So we know that this can be quite a common thing. And it's kind of ironic because mast cells are essential for life, but yet they can cause so many problems.
[08:38] What we really need — and we don't have yet — is a really large population-based study, because otherwise we have some studies, but selection bias is often a factor. For example, there are some studies looking at hospitalized patients or patients who present to specialty clinics. That really doesn't tell you true prevalence data. That just tells you about that group of people — it's a self-selected population. We need to look at the population at large to get the true prevalence.
[09:08] But we know that there's this huge overlap. And when you and I presented at IADMS in Montreal in 2019 — little did we know we wouldn't see each other in person until a gazillion years later — when we presented together, one of the slides that we included was one with three overlapping circles. One was Ehlers-Danlos syndromes, another one was dysautonomia, and the other one was mast cell activation. And the reason for bringing that up is that there's a lot of symptoms that can overlap. So it can be very hard to tease out what symptoms are from which of those conditions.

[09:47] Jennifer Milner: It sounds like it. And trying to parse it all out is one of the problems that people with hypermobility disorders run into anyway — they have this whole host of these crazy mismatched symptoms and they're not sure what to do with it. You're like, well, how much of it is this and how much of it is that? So trying to figure this out is sometimes one piece of the puzzle, but it sounds like a bigger piece of the puzzle than we thought previously, perhaps.
[10:16] So we've discussed mast cell disorders before with the amazing Dr. Anne Maitland in episode 35. So for those of you listening, you may want to go back and give that one a listen again, or for the first time if you haven't. It is a huge topic to cover. But today we wanted to look at the pain that may be associated with mast cell disorders. So why are we discussing pain in mast cell disorders?

[10:39] Dr. Linda Bluestein: So there's really three reasons. One, pain is highly prevalent in mast cell disorders, and it's often described as migratory or involving the entire body. And we know that in traditional medical settings, if a patient goes in and describes migratory pains — meaning that it travels from one part of the body to another, one week it's in this area and another week it's in this area, or it involves the entire body — that's one of the quickest ways to get your provider, if they're not somebody familiar with these things, to go, I don't know what to do with this.
[11:16] So it's really, really important to have these conversations so that people understand that mast cell disorders can really be an explanation for pain in a lot of these conditions. And it can also be one of the most severe symptoms. There's a great publication from 2014 where they looked at the prevalence of moderate or extreme daily or occasional pain in various different parts of the body in people who had these conditions. And they found, you know, 96% stomach pain, 92% lower abdominal pain, 91% upper abdominal pain. In muscle, nerve, and connective tissue, 95%. Chest pain, 76%. And headache, 84%.
[11:57] So backing up to what that says — moderate or extreme, daily or occasional pain. Mild pain or infrequent pain didn't make the cut for these percentages. So this is really, really important because of that high prevalence. And I truly believe that a lot of people are experiencing painful conditions and have no idea that this is part of the picture. And if this is addressed, they could really improve their quality of life quite significantly.
[12:29] Secondly, it's really important because there are many clinical pain disorders that have strong data suggesting that they're associated with mast cell disorders. For example, migraine, pelvic and bladder pain, endometriosis, irritable bowel syndrome, fibromyalgia, vulvodynia, complex regional pain syndrome, non-cardiac chest pain, prolonged post-operative pain, and sickle cell anemia pain.
[12:51] And the third reason is something I've been touching on a little bit already — one of the strongest activators of mast cells is stress. So when you go to the doctor and get blown off, of course that can cause you to feel worse, because now you went to somebody trying to get help and they didn't know. And in fairness to them, there are really good reasons why they don't know. They're not taught this in school. There's not a lot of information coming to them from within their own networks. The information is out there, but if they're not seeking it, it's not coming to them. So it's really important that we address these as soon as possible so that we don't have that increased level of stress that can cause the mast cells to misbehave even more and can cause the person to be even more symptomatic. So the next time they go to the doctor, they have even more problems and are probably gaslit even worse.

[13:48] Jennifer Milner: Yeah, we see this time and time again. In every conversation we have, we talk about doctors not having all the information that they need to figure out what's going on, which then sometimes loops back onto the patient as "there's nothing going on." And they're hearing, oh, that's not possible, that's not really a thing. So that can be really stressful.

[14:10] Dr. Linda Bluestein: Absolutely.

[14:10] Jennifer Milner: So if there's such a broad umbrella over mast cell disease and mast cell disorders — as I said earlier, I often think of it as allergies kind of run amok — what is it that actually causes the pain? Let's get down to the details. What is it that causes the pain in these mast cell disorders?

[14:31] Dr. Linda Bluestein: Sure. And I want to address the first part of what you said there, because I think this is really important. When I first started to learn about mast cell disorders, I thought, well, that's just everything. They're throwing everything into the list of potential symptoms, just covering all the bases.
[14:49] And what it really is, is one of those things where you know it when you see it, because a person comes in with so many things. They have so many intolerances to medications. They have so many different problems in different bodily systems. It's not that you pluck out any one of the things listed as a symptom of mast cell disorders and say, I have that — everybody has that. It's the combination of things together that gives us that really strong clinical suspicion. This really sounds like what this person has — if that makes sense. And then when they respond to the treatment, you go, okay, that's confirmatory that this is part of the problem.
[15:38] So in terms of what causes pain in mast cell disease — when mast cells release their mediators and degranulate, they release a lot of pro-inflammatory mediators. Now, inflammation is a normal part of the healing process. If you have an injury or if you have an infection — a lot of people listening to this, if they've recently had COVID or the flu or even a vaccine, and I'm very pro-vaccine, but when we get vaccines the body is trying to mimic having an infection. So you're going to have a reaction like when you have an infection. It's just more controlled. And it also prepares you for if you get exposed. So that inflammatory reaction is something that we see as part of the response to tissue injury, and it's part of what we see in response to pathogens — bacteria, viruses, fungi, mold, things like this.
[16:35] And so what happens is those inflammatory mediators actually cause the nociceptive, the pain-sensing neurons to release their own vasoactive neuropeptides, and that causes the recruitment of more immune cells, including mast cells, macrophages, neutrophils, etc. And that causes a positive feedback loop which can lead to chronic pain. So the mast cells degranulate, they release these pro-inflammatory mediators — which include things like histamine, tryptase, nerve growth factor, TNF-alpha — and then those things cause the recruitment of these other immune cells. And so it just starts this vicious cycle.
[17:18] And that's just what happens in the peripheral nervous system. We have other things happening in the central nervous system that cause the activation of different mediators and sensitization of the central nervous system. So treating mast cell disorders can really help us reduce pain levels if we are taking the right approach and really assessing this appropriately.

[17:43] Jennifer Milner: And I remember Dr. Maitland talked about how she looks at it as mast cells misbehaving — not on purpose, like haha, this is fun — but they've been trained for one job and they've been told to do that job, but they're doing it in the wrong place or in the wrong way or it's the wrong response. So rather than firefighters rescuing a kitten from a tree with a ladder, they're just going to chop the tree down. And I thought that was a very helpful way to look at it.
[18:11] Going back to what we mentioned earlier — you said patients can feel gaslit. We have had so many people in the Bendy community talk about how difficult it is for them to accurately communicate their pain levels with their caregivers, with their medical professionals. So how can medical professionals evaluate pain in the patient with a mast cell disorder?

[18:31] Dr. Linda Bluestein: It is really challenging. I mean, the first challenge is time. It takes a lot of time to really dig in and assess what's going on in a person who has a mast cell disorder, because they likely have symptoms in just about every bodily system. So if you really want to assess that in a comprehensive way, that really takes a lot of time.
[18:53] But this is also where — I wish I could remember the episode number — the conversation that we literally just had with Drs. Iko Callahan and Stephanie Greenspan, where we discussed their hypermobility screening tool.

[19:08] Jennifer Milner: I can't remember the number, but yes, I know the episode. Yes.

[19:10] Dr. Linda Bluestein: Yeah, that we just released. In any event, in that episode, we discussed their hypermobility screening tool. What I love about it is it really is a quicker way for a clinician to assess what's going on with this person, because they have it broken down by bodily system. So if you see a lot of X's on the different bodily systems, it tells me there's something systemic happening here — it's not one single thing happening to this person.
[19:47] So one of the biggest challenges is time. And that's why I'm so excited about this hypermobility screening tool — I feel like that's going to be a huge time saver. Obviously, the clinician still has to be interested in learning about these things and having an open mind, which I hope we get more and more of, because there are a lot of challenges in healthcare right now. But I think that tool is going to be really useful.
[20:13] Secondly, pain is a subjective experience. It's only experienced by the person in pain. A lot of times people will say, my doctor didn't validate how much pain I'm in. And I would like for us to all recognize the fact that we don't need them to do that. They can't possibly understand the pain that we're in. And I think sometimes people expect them to validate it and then they don't.
[20:34] And of course you need them to do the proper workup and evaluation and all of those kinds of things, but only you are experiencing the amount of pain that you're in. Not your family members, nobody else. It is a subjective experience. Only you are experiencing it.
[20:52] And by the way, I do want to quickly mention that pain is protective. People who have something called congenital insensitivity to pain die early. So pain is there to protect the body. Just like mast cells are not bad guys, pain is not a bad guy. Pain is something that we need. It's just when it gets widespread and chronic that it can be really difficult to get back under control. But we do need pain to give us the warning signs.
[21:22] So getting back to how they can evaluate a person — mast cell testing is very, very difficult to do, and it can be unhelpful. But getting at least a baseline tryptase is very important because that can at least help establish or rule out other potential diagnoses like systemic mastocytosis or hereditary alpha-tryptasemia.
[21:45] And in my practice, whether I'm working with a client or a patient, if I have a high clinical suspicion I'll go ahead and start presumptive treatment. I'll go ahead and order lab testing. And I've had so many success stories since I started really incorporating more mast cell treatments into my practice — many more than I did before I started really using that approach.

[22:11] Jennifer Milner: That's so interesting, because you never set out to be a mast cell specialist, right? You never opened your clinic saying, I'm going to treat mast cell disorders. But it was something that came up over and over again with hypermobility, and you thought, well, maybe if I treat this, I will be able to treat the pain and manage it.
[22:27] So are there steps that someone with a mast cell disorder can take themselves to self-manage their pain?

[22:34] Dr. Linda Bluestein: Absolutely. There are several steps that they can take. The first step should be to identify triggers. And this can be really, really complicated. If you have a lot of triggers, it can be very difficult to detect them and assess them because there's so much going on and it's really hard to tease this out. And the whole goal is not necessarily to avoid all of these things, but to get your mast cells better behaving and have more of a balance in your life. There are some things that should be relatively easy to remove and other things that are a lot harder to remove.
[23:05] So for example, fragrances. We are absolutely bombarded with fragrance in laundry detergent, fabric softener, cleaning products. You walk into Target and you're bombarded. There are certain aisles that patients of mine cannot go down. So if you're one of those people who can't go down those aisles, this is an important episode for you to listen to. Fragrances are a huge one, and one that can be pretty easily avoided or at least mitigated — see how that affects you.
[23:39] Foods are another really, really important one. And whenever possible, I strongly recommend that people work one-on-one with a registered dietitian nutritionist like Kristen Kaskanen, who is one of the members of Team Bendy Bodies. Working one-on-one with somebody is very, very helpful because it can help them to identify specifically the foods that are causing problems.
[24:00] And I do want to mention — for abdominal pain, and because we're talking of course to a lot of people who may or may not be aesthetic athletes, but if they are, we know that population is at higher risk of eating disorders or disordered eating — it can be very hard to tease out, because if a person has abdominal pain after they eat, they don't want to eat, or they at least don't want to eat certain foods. So it can look like they have disordered eating or an eating disorder, and they can be losing weight because of food intolerances. But it really might be more medically related than psychologically related.

[24:38] Jennifer Milner: That makes sense. That's a great point. Yeah.

[24:39] Dr. Linda Bluestein: So foods are a very, very important thing. I gave a talk recently at the Colorado Ballet Academy, and somebody came up to me afterwards — a young dancer talking about her abdominal pain. And that's exactly what she's experiencing: severe abdominal pain and bloating after every time she eats, regardless of what she eats. And she's having difficulty getting proper care because they've probably done the standard things. So this kind of thing can be really hard to tease out.
[25:08] But when you look at the foods and the fragrances, there are some other things that can activate mast cells — including exercise, which of course, if you're an aesthetic athlete, we don't want people to stop exercising. But it's really important not to overheat. Easier said than done, right? You're in Texas. Hopefully studios down there have air conditioning, but they probably get really hot certain times of the year. The AC can't always keep up. And no matter where you are in the country, there are going to be times of year that heat is going to be a real issue, whether you're a dancer or not.
[25:44] So overheating can be a trigger of mast cells, and so can stress. Knowing what some of these triggers are is really important — and these are the most common ones, by the way: stress, heat, exercise, foods, and fragrances. Those are five of the most common triggers. So those are things that you want to consider. And it can be like a bucket where you just get to a point and then it tips over. It doesn't have to be one thing — it can be a combination of things.
[26:15] Then second, we want to consider environmental modifications. So ideally, you're drinking out of glass or stainless steel whenever possible. You're not using plastic containers — especially not heating things in plastic containers. I know it can be hard if you're at the studio and you need to grab something quick to eat and you have a microwave, but I would really recommend using glass containers whenever possible.
[26:43] I advise my patients to use filtered water. Room temperature water can sometimes be better tolerated than cold or hot water — and sometimes people react to drinking water, believe it or not. Temperature matters, and it's highly variable by person. Purifying your air can be really beneficial, and of course the no-fragrance approach. Working with the dietitian — that's kind of part two, these environmental modifications, a lot of which are not that difficult to do.
And then number three, working one-on-one with a dietitian when possible and working on dietary changes, keeping in mind that tolerance will change over time. The goal usually is not to remove things forever, but to look at what things are causing you the most problems, work on getting those out of your diet, and increasing other healthy things — antioxidants and foods that are less likely to contain histamine or cause histamine release. This can be really tricky, which is why working one-on-one when you possibly can is very beneficial.
And then step four is looking at medications and supplements. So that's the approach that I recommend.

[27:56] Jennifer Milner: Okay, well, so then going one step further — how does a medical professional treat pain in a patient? We've talked about how a medical professional can try to sort of parse pain and identify it, and we've talked about steps that patients can do themselves to try to mitigate the pain. But how does a medical professional actually treat pain in a patient?

[28:15] Dr. Linda Bluestein: So I'm hoping that the first thing they'll be looking at is why the mast cells are misbehaving. Because it can be that the person has a primary immune deficiency, and in that case, we would call the mast cell activation syndrome a secondary mast cell activation syndrome. And there is a different ICD-10 code for secondary mast cell activation syndrome as compared to primary mast cell activation syndrome. Secondary just means that it's caused by something else.
[28:43] So it's very important to make sure that the person doesn't have a primary immune deficiency. It's important to ask: has this person had infections all throughout their life? Have they been more susceptible to infections than the average person? I have one patient who has been in the ICU many, many times, is pretty much on oxygen full-time, has been on a ventilator, and has had really serious infections. It was more evident in her case, but it doesn't have to be that blatant. It can be much more subtle.
[29:14] So that's the first thing that's really important — to establish why does this person have this.
[29:19] Another thing that can be secondary is something called TILT, toxicant-induced loss of tolerance. We're getting more and more chemicals in our environment, and we're getting more and more indoor air pollution. These chemicals can actually cause our bodies to be intolerant of other foreign substances, basically. So that can lead to mast cell activation syndrome.
[29:48] So we want to make sure that we get the appropriate lab testing because those findings can help guide therapy. First, we should be asking why. Then we should be looking at what lab tests we want to run. I mentioned tryptase already, and there are a number of other different tests that may be specific for mast cell activation syndrome. There are blood tests and urine tests we can do, with very specific ways the labs have to be obtained and very specific things that patients have to do in order to have the lab testing performed. That's nuanced, and a medical professional needs to be interested in learning that. But it's not impossible — the information is definitely out there.
And then it's also important to know what medications and supplements to prescribe with very, very specific intentions. For example, sometimes the medication needs to come from a compounding pharmacy instead of a regular pharmacy. There are actually some antihistamines that have excipients — meaning the so-called inactive ingredients — that are actually the problem and what's causing the person to have mast cell activation. So if we instead have that medication formulated at a compounding pharmacy, we can sometimes use a different filler and a different capsule, and actually produce that medication in a safer way for that patient.
[31:20] So any physician who's listening to this podcast — and we know lots of physicians do — any physician who wants to help people with mast cell activation syndrome and help them with their pain, it's really important to go through these steps. And you really need to make friends with a compounding pharmacy. Talk to the patient. The patient usually knows what fillers are safe for them, what capsules are safe for them. So that's one of the most important things — understanding about excipients, the inactive ingredients, and working with compounding pharmacies.

[32:03] Jennifer Milner: For people who have doctors who don't necessarily understand what they're going through, what would you recommend that the person do or say to their medical professional?

[32:15] Dr. Linda Bluestein: I would strongly suggest that people start with describing their symptoms when asking for an evaluation, and it's very important to be as prepared for your appointments as possible. I was interviewed for the Hearty Mom Podcast and went into a lot of detail about handling medical appointments. I have a link to that on my website. So if you're interested in checking out that interview, I don't want to take too much time right now on appointment handling in general, but it's very important to be well prepared so that you can use the time as efficiently as possible.
[32:49] I really strongly suggest not going in and saying, "I want an evaluation for mast cell activation syndrome," because that might be a turnoff to a lot of doctors. Start with your symptoms and your signs. Symptoms are things that you are experiencing but that are subjective. Signs are things that other people can observe.
[33:10] I strongly recommend — if you get rashes, hives, swelling, anything that's visible or that other people can observe — take pictures, take video, anything that can help that provider understand what you're experiencing, because you aren't necessarily going to have it happen while you're in the office. I've had people bring some dramatic pictures. I've also had it happen where I walked in the room and within minutes the person's face just turned bright red and they started getting hives all over. And it's like, this is going to be easy. Not that that's all it takes, but it was really dramatic. I've had some really dramatic cases.
[33:53] So start with your symptoms and your signs. If you're nearing the end of the appointment and it hasn't come up, say, "I really would like to share what I'm most worried about. I'm really worried that I have mast cell activation syndrome." Or, "I'm really worried that I have mastocytosis" — whatever it is you're worried about. "I'm really worried that I have a mast cell disorder, and I would really like to be evaluated for that."
And kind of give them a gentle out — make it so that it's more graceful for them to say, this isn't something I'm super familiar with. Make it easy for them to say that.

[34:40] Jennifer Milner: That's really helpful, and it's great for people to acknowledge to the doctor — in a graceful way, as you mentioned — "I know this is probably not your area of expertise. This is my concern." So that you are acknowledging to the doctor that they're a part of your team, that there may be more information that needs to be gathered or a specialist that needs to be seen, but you are trusting the doctor with this next step of your journey, as in: help me figure this out. So that's a very gentle way to speak about it.
[35:10] So if you could wave a magic wand — because this just seems to be all over the place, like a massive game of Twister, and trying to get your left foot on red and your right hand on blue — we're not even talking about curing this, we're talking about just trying to mitigate the pain or treat it. So if you could wave that magic wand, what sort of silver bullet would show up? What would you do?

[35:43] Dr. Linda Bluestein: Probably the first thing I would do is get rid of environmental toxins and pollutants. We're talking a magic wand here, so—

[35:51] Jennifer Milner: Right, bring it on.

[35:52] Dr. Linda Bluestein: Yeah, you gave me permission. So if we could get rid of environmental toxins and pollutants, that would be hugely beneficial. We will share the website in the show notes, but there is a doctor — Dr. Claudia Miller, who is at UT San Antonio — and she has done some amazing work on TILT, toxicant-induced loss of tolerance. She has really studied this extensively with her team, and they have really found that things like pesticides are hugely problematic: indoor air pollution, fragrances, cleaning chemicals, scented laundry products, personal care products.
[36:34] I've had lots of patients and clients who were doing quite well, and then they did a remodeling project or some construction, or they got new furniture, and that caused a flare of their symptoms. Furnishings can release things like formaldehyde and adhesives, and foam cushions can even be problems. So those kinds of things can really be problematic.
[36:56] Another thing that can be problematic is mold. We know that people get exposed to mold, and sometimes that can really cause a lot of problems with the mast cells, and it can take quite a while to get back under better control. And what's tricky about that — I was just involved in a conversation about this recently — is you can do urine testing for mold toxins. But we don't have enough data to really understand: if a person has a high level of mold in their urine, does that mean that they're efficient at removing the mold, or does that mean they have high mold exposure that is causing part of their symptoms? And if someone has low mold, does that mean they're not good at removing it, or that it's not a problem? A lot of the testing we can do — extra testing that more traditional doctors don't usually order — we really need to understand what those test results are telling us. And I feel like I keep saying we need more data, but it really is true.
We also want to eliminate unnecessary medications, because sometimes those have excipients. I find so often people get prescribed a medication and then get prescribed another medication to deal with the side effects of the first one. We want to address the root cause whenever we possibly can.
[38:13] One of the hallmark symptoms of TILT is new onset intolerances to structurally unrelated substances. So if you're allergic to penicillin and ampicillin or amoxicillin, those are structurally related. Penicillins and cephalosporins are structurally related. So if you're allergic to a cephalosporin like Ancef and you're allergic to penicillin, those are structurally related. But if you're allergic to things that are structurally unrelated, that's what they're calling the hallmark symptom of TILT.
[38:44] So if I could wave a magic wand, that would be what it would be.

[38:50] Jennifer Milner: Well, that would be huge. Thanks for the wand, by the way.

[38:54] Dr. Linda Bluestein: I want it back.

[38:58] Jennifer Milner: But it does come back to not looking for a magic bullet in — oh, you have this pain, let's find the magic treatment for fixing it once you have it. It is: let's get to the place where we're not having these reactions and we're not triggering these mast cells in an inappropriate way. So again, it's getting back to prevention and prehab — the thing before the "hey doc, I feel terrible," right?

Dr. Linda Bluestein: Right.

[39:26] Jennifer Milner: What we're trying to get to so that we don't have to go in and have that conversation.

[39:31] Dr. Linda Bluestein: Right, exactly. And in some people, the response to treatment is more subtle and it's a very, very long odyssey. They usually had a long diagnostic odyssey, and then the treatment odyssey can also be long because you want to try something for a couple of weeks and then try something else for a couple of weeks. You can't make multiple changes at once — you need to change things at least several days apart, because otherwise you can't make a connection between what you just changed and your symptoms.
[40:03] And then the other problem — this is extremely common for people with mast cell disorders — is that their symptoms are up and down, up and down. One day is not the same as the next day. So if you're doing an experiment, you always want to control as many variables as possible, because otherwise it's very hard to make correlations between things. And in mast cell disorders, it's really, really hard to do that.
And as Dr. Maitland mentioned in her interview, we're breathing on average 16 to 20 times a minute. So we're inhaling things. Mast cells, by the way, are located in mucous membranes — in our nose, in our throat, in our esophagus, in our trachea, in our lungs, all throughout our digestive tract, in the vagina. They're located on our skin. They're located on all of these surfaces. So sometimes it takes a really long time to find a protocol or combination of things that really seems to help that person.
[41:04] But I've had other people where they'll send me a message and I can hardly believe it. I have this one guy who was feeling quite rough and now he's biking 30 miles a day. He can't believe it. So sometimes we can get really dramatic results very quickly, and other times it takes a long time.
[41:27] So another important thing is: don't compare yourself to someone else. Someone else's journey is not going to be the same as your journey. Please do not blame yourself if it's taking you longer to find the thing or combination of things that's going to help you improve your quality of life.

[41:46] Jennifer Milner: So I know we've kind of gone all over the place here with this conversation. Was there anything that we didn't cover that you wanted to make sure that we did?

[41:54] Dr. Linda Bluestein: I think just the fact that these different experiences that a person can have with mast cell disorders can really occur all throughout your lifetime. If I use myself as an example, I had asthma as a baby, then had gastrointestinal problems as a child, all kinds of chemical sensitivities as a child, migraines as a teenager, more gastrointestinal issues. As a resident at Mayo, I was tested for porphyria multiple times. I was ultimately diagnosed with irritable bowel syndrome, which of course tons and tons of people are diagnosed with. But even myself, I didn't put all of that together as mast cell conditions until much later on in life. It's not like you have to experience all of these things all at once.
And I hope I'm not jinxing myself, but I no longer have asthma. I no longer have migraines. I no longer have irritable bowel or any symptoms of that. I no longer have eczema and a lot of these other things. So number one, there is hope. I no longer have chronic pain. Do I have pain? Yes. Do I have to do a lot of lifestyle modifications? Yes. But do I have pain every single day? No. So there is hope.
[43:21] And number two, it sometimes takes really looking at the whole lifespan of symptoms — not just a single snapshot — in order to establish the diagnosis. And that's so important for us to remember so we don't get discouraged or frustrated or zero in too much on just the one issue.

[43:41] Jennifer Milner: So where can people find you if they want to know more about this?

[43:46] Dr. Linda Bluestein: Several places. It's good to start with the hypermobilitymd.com website, and from there you can access the podcast and all the episodes. And Bendy Bodies now has services, so you can work with any of us. You can work with me as a client through Bendy Bodies — anybody worldwide can be a client. There are links to contact me, a link to contact Jen, and a link to contact Kristen. And people who are in Colorado or Wisconsin can become a patient.
[44:21] The main difference between becoming a patient and becoming a client is: if you live in Wisconsin or Colorado, I have medical licenses in those states, so I can treat you, make the diagnosis, prescribe medications, order lab testing, and all of that. If you're a client, you have one-on-one sessions and I can give very specific recommendations that are informational and educational, but I cannot order lab testing for you or prescribe medication. But I still make very specific suggestions.
[44:57] And also, we're very active on Instagram — that's probably the most common place you'll find me. The handles are @HypermobilityMD and also @bendy_bodies. We're very active on both of those. We also have Bendy Bodies on Facebook and Hypermobility MD on Facebook. And I'm also pretty active on Twitter, all as Hypermobility MD.

[45:20] Jennifer Milner: There we go. So on Twitter, you can find her as Hypermobility MD as well.
[45:21] You have been listening to Bendy Bodies with the Hypermobility MD, and our guest today was our own Dr. Linda Bluestein, founder of Bendy Bodies. Thank you so much for sitting in the hot seat today and allowing me to grill you on this. I know it is a topic that a lot of our listeners wanted to dig deep into. So thank you for sharing your wisdom with us today.

[45:47] Dr. Linda Bluestein: Absolutely. Anytime. Thank you so much.

[45:50] Jennifer Milner: If you love what you have learned, follow the Bendy Bodies Podcast to avoid missing future episodes. Screenshot this episode and tag us in your story so we can connect. Our website is www.bendybodies.org and follow us on Instagram @bendy_bodies. Leaving a review, following the Bendy Bodies Podcast, and sharing the podcast helps spread the word about hypermobility and associated conditions.
[46:15] This information is not intended to diagnose, treat, cure, or prevent any disease. The information shared is for educational purposes only and is not a substitute for medical advice, diagnosis, or treatment. Please refer to your local qualified health practitioner for all medical concerns. We will catch you next time on the Bendy Bodies Podcast.