54. Managing Mast Cell Pain with Linda Bluestein, MD

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00:00 

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. 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. I think sometimes people thinking that  they're going to validate it and then they don't. 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.

00:50 

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 Cohost Jennifer Milner here with the hypermobility  MD, Dr. Linda Bluestein.  

01:06 

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.  

01:15 

Jennifer Milner 

Our guest today is our very own Dr. Bluestein. Hello! 

01:22 

Linda Bluestein 

Hello.  

01:25 

Jennifer Milner 

I know it's weird to say hi to ourselves, right?  

01:27 

Linda Bluestein 

Right. Exactly.  

01:29 

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 about yourself and where you come from?  

01:48 

Linda Bluestein 

Sure. I grew up as a ballet dancer, really wanting a professional career, but that didn't pan out. 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. 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. 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. 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. So I did that.  

02:39 

Linda Bluestein 

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 in age. I thought, where is a better  community than the dance community and the aesthetic athletes and really catching them before they're really  having a lot of problems and hopefully providing them with information and podcasting. I feel like is such a  great way to do that. I was super excited when you jumped on board and we've gotten great feedback from  people, a lot of “aha!” moments right, that we hear about. And so yeah, that's basically it.  

03:19 

Jennifer Milner 

We are going to tap into your knowledge on pain and management as we talk today about mast cell disorders.  Let's start this off with what exactly is or are mast cell disorders. 

MD 

03:32 

Linda Bluestein 

Sure. Mast cells are immune cells that are present in connective tissues all throughout the body. What happens is  mast cells that can get activated and degranulate and when that happens they modify various different aspects of  bodily physiology and pathology. Mast cells are very important for a number of normal physiologic functions.  For example, they're involved in an innate and adaptive immunity, they're involved in vasodilation or the status  of blood vessels, how vasodilated or how constricted they are. That's how they can be influential in potentially  symptoms like we would see with Dysautonomia. 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. The prevalence of mast cell disorders is really  unknown. 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 into that later.  

04:44 

Linda Bluestein 

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. Some of the most  common conditions or 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 are 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. 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. There's something  else called hereditary alpha trypticemia where you have an extra copy of the alpha tryptase gene and you have  higher levels than normal of tryptase in the blood.  

05:40 

Linda Bluestein 

Those people actually can end up with a clinical picture that looks just like hypermobility, EDS, dysautonomia,  and Mast Cell Activation syndrome. If a person gets elevations of tryptase then it can be a good idea, especially  if you're Caucasian, because Caucasians can be more common. It can be a good idea 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 kind of a combination of all of those symptoms.  

06:12 

Jennifer Milner 

That's so interesting. You're saying this one specific diagnosis could actually cover what we have parsed out into  three different diagnoses until now. That's so interesting. Also, what a broad definition or 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.  

06:48 

Linda Bluestein 

It can be for some people, for sure. Yeah, right.  

06:51 

Jennifer Milner 

It's interesting that it can cover such a broad variety of things and affect your body in so many different ways.  Why would hypermobile people be particularly interested? Or why should they be aware of mast cell diseases?  

07:04 

Linda Bluestein 

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. We know that people who have mast cell disorders are more likely to have hypermobility. We  know that these things travel together. We don't know why, though. 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. Like, 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. We know that this can be quite a common thing. It's kind of  ironic because mast cells are essential for life, but yet they can cause so many problems.  

08:01 

Linda Bluestein 

So it's really fascinating. 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. So, for example, there's some  studies looking at, like, hospitalized patients or looking at patients who present to specialty clinics that really  doesn't tell you true prevalence data that just tells you of that group of people. That's a self selected population.  We need to look at the population at large, really, to get the true prevalence. We know that there's this huge  overlap. When you and I presented at IADAMS in Montreal in 2019, little did we know we wouldn't see each  other in person until like a gazillion years later. Right. We presented together, one of the slides that we included  in our presentation was one with three overlapping circles. One was a Ehlers Danlos syndromes, another one  was Dysautonomia, and the other one was mast cell activation.  

09:00 

Linda Bluestein 

The reason just for bringing that up really quickly is because there's a lot of symptoms that can have overlap so  it can be very hard to tease out what symptoms are from which of those conditions.  

09:11 

Jennifer Milner 

It sounds like it sounds like, as you said, there needs to be more studies done. Trying to parse it all out is one of  the problems that I think people with hypermobility disorders run into anyway, that they have this whole host of  these crazy, mismatched symptoms and they're not sure what to do with it. You're like, how much of it is this?  And how much of it is this? Trying to figure this out is sometimes one piece of the puzzle, but it sounds like a  bigger piece of the puzzle than we had thought previously, perhaps. We've discussed mast cell disorders before  in episode 35. 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. Today we wanted to look at the pain that may be associated  with mast cell disorders.  

09:59 

Jennifer Milner 

Why are we discussing pain in mast cell disorders?  

10:03 

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. We know that in traditional medical settings, if a patient goes into a  clinic and describes migratory pains, meaning that it travels from one part of the body to another part of the  body, 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 that's familiar with these things, to go, oh, my gosh,  I don't know what to do with this. It's 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.  

11:06 

Linda Bluestein 

They found, like, 96% of stomach pain, 92%, lower abdominal pain, 91%, upper abdominal pain in muscle,  nerve, and connective tissue, 95%, chest pain, 76%, and headache, 84%. Backing up to what that says, moderate  or extreme daily or occasional pain. Just mild pain or infrequent pain didn't make the cut for these percentages.  This is really important because of that high prevalence. I truly believe that a lot of people are experiencing  painful conditions and have no idea that this is part of the picture. If this is addressed, they could really improve  their quality of life quite significantly. So this is really important to investigate. Secondly, it's really important  because there's 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, complex regional pain syndrome, non cardiac chest pain, prolonged postoperative pain and sickle  cell anemia pain. 

12:18 

Linda Bluestein 

The third reason is something that I've kind of been touching on already. One of the strongest activators of mast  cells is stress. You go to the doctor and you 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. In fairness to them, there's really very good  reasons why they don't know. They're not taught this in school. There's not a lot of information that they're  getting from within their own networks. I mean the information is out there but if they're not seeking it's not  coming to them. You know what I mean? 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.  

13:07 

Linda Bluestein 

The next time they go to the doctor they have even more problems and are probably gaslit even worse.  

13:13 

Jennifer Milner 

Yeah, I mean 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 be able to figure out what's going on which then sometimes loops back onto  the patient as there's nothing going on right. What they feel, is what they hear and oh, that's not possible, that's  not really a thing.  

13:35 

Jennifer Milner 

So yeah, that can be really stressful. Absolutely. If there's such a broad umbrella over mast cell disease, with  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 detail. What is it that causes the pain in these mast cell disorders?  

13:55 

Linda Bluestein 

Sure. 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 in  the list of potential symptoms and just covering all the bases. What it really is it's one of those things where 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 that it's not that. Because you could pluck out  any one of the things that are listed as a symptom of mast cell disorders. You could pluck out one of those  things and say, oh, my God, I have that. And everybody has that. Everyone in the world has that. It's the  combination of things together that gives us that really strong clinical suspicion.  

14:52 

Linda Bluestein 

Oh, this really sounds like this is what this person has, if that makes sense. When they respond to the treatment,  then you go, oh, okay, that's confirmatory that this is part of the problem. Okay, so in terms of what causes pain  in mast cell disease, so when mast cells release their mediators, they actually, when they 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, or we're  trying to mimic like having an infection. You're going to have a reaction like when you have an infection, it's  just more controlled, and it also prepares you then for if you get exposed.  

15:43 

Linda Bluestein 

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. What happens is those  inflammatory mediators actually cause the nociceptive or the pain receptors, the pain sensing neurons to release  their own vasoactive neuropeptides. That causes the recruitment of more immune cells, including mast cells,  macrophages, neutrophils, et cetera. That causes a positive feedback loop, which can lead to chronic pain. The  mast cells degranulate, they release these pro inflammatory mediators, which include things like histamine  tryptase nerve growth factor, TNF alpha. Those things cause the recruitment of these other immune cells. It just 

Page 5 of 13 

Episodes have been transcribed to improve accessibility of this information. Our best attempts have been made to ensure accuracy,  however, if you discover a possible error please notify us as soon as possible. 

Transcript for Bendy Bodies Podcast, Episode 54: Managing Mast Cell Pain with Linda Bluestein, MD 

starts this vicious cycle, 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.  

16:59 

Linda Bluestein 

Treating mast cell disorders can really help us a lot reduce pain levels if we are taking the right approach and  really assessing this appropriately.  

17:11 

Jennifer Milner 

And I remember Dr. Maitland talked about how she looks at it as mast cells misbehavior and not like, on  purpose. They've been trained for one job and they've been told to do a job, but they're doing that job in the  wrong place or in the wrong way, or is the wrong response. Rather than firefighters rescuing a kitten from a tree  with a ladder, they're just going to chop the tree down. I thought that was a very helpful way to look at it. 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. How can medical professionals evaluate pain in the patient with a  mast cell disorder? 

17:55 

Linda Bluestein 

It is really challenging. I mean, the first challenge is time. It take 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. If you really want to assess that in a comprehensive way, that really takes a lot of time. This is also  where I wish I could remember the episode number. Maybe Jen, you remember it, but the conversation that we  literally just had with doctors Aiko Callahan and Stephanie Greenspan where we discussed their hypermobility  screening tool. 

18:35 

Linda Bluestein 

What I love about their hypermobility screening tool is it really is a quicker way of a clinician to assess what's  going on with this person because they have it broken down by bodily system. If you see like an X on  everything or not even, it doesn't have to be everything, of course, but if you see a lot of X's on the different  bodily systems and things going on, okay, to me it tells me there's something systemic happening here. It's not  one single thing that's happening to this person. One of the biggest challenges is time. That's why I'm so excited  about this hypermobility screening tool, is because I feel like that's going to be a huge time saver. Obviously the  clinician has to still be interested in treating the person, learning about these things and having an open mind,  which I hope to God we get more and more of that because there's a lot of challenges in healthcare right now,  just period.  

19:34 

Linda Bluestein 

I think that's going to be a really useful tool. 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. 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. I think sometimes people thinking that they're going to validate it and then they don't. 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. By the way, I do want to quickly mention that pain is protective.  People who have something called congenital insensitivity to pain, they die early.  

20:26 

Linda Bluestein 

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 it. We do need it to give us the warning signs. Getting back to how they can evaluate a  person. Mast cell testing is very difficult to do and it can be unhelpful. 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. In my practice, whether I'm working with a client or a patient, what I do is if I 

have a high index or high clinical suspicion, I'll go ahead and start presumptive treatment, I'll go ahead and  order lab testing or whatever.  

21:22 

Linda Bluestein 

I've had so many success stories since I started really incorporating more mast cell treatments into my practice. I  would say I've had many more success stories than I did before I started really using that approach.  

21:36 

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. 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. Are  there steps that someone with a mast cell disorder can take themselves to self manage their pain?  

21:58 

Linda Bluestein 

Absolutely. There's several steps that they can take. The first step should be to identify triggers. And this can be  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. 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's some  things that should be relatively easy to remove and other things that are a lot harder to remove. So, for example,  fragrances. We are absolutely bombarded with fragrance in laundry detergent, fabric softener, cleaning products.  You walk into Target and of course you're bombarded right. There's certain aisles that patients of mine, they  cannot go down those aisles. If you're one of those people that are like, I can't go down those aisles, this is an  important episode for you to listen to.  

22:54 

Linda Bluestein 

Fragrances are a huge one and one that can be pretty easily avoided or at least mitigated, right? And then see  how that affects you. Foods are another really important one. Whenever possible, I strongly recommend that  people work one on one with a registered dietitian nutritionist like Kristen Koskinen, who is one of the members  of Team Bendy Bodies. If people can work one on one with somebody, it really is very helpful because it really  can help them to identify specifically the foods that are causing them problems. I do want to mention for  abdominal pain, and because we're talking, of course, to a lot of people who they may or may not be an aesthetic  athlete, but if they are, we know that population is at higher risk of eating disorders or disordered eating. Well, it  can be very hard to tease out because if a person has abdominal pain after they eat, well, now they don't want to  eat, or they at least don't want to eat certain foods.  

23:47 

Linda Bluestein 

It can look like they have disordered eating or an eating disorder, and they can be losing weight because of the  fact that they have food intolerances. It really might be more medically related than psychologically related.  Does that make sense?  

24:03 

Jennifer Milner 

That does, and that's a great point.  

24:05 

Linda Bluestein 

Yeah. So foods are a very important thing. I gave a talk recently at the Colorado Ballet Academy, and somebody  came up to me afterwards, and she was a young dancer talking to me about her abdominal pain. That's exactly  what she's experiencing, severe abdominal pain and bloating after every time she eats. It doesn't matter what she  eats, and she's having difficulty getting proper care because, of course, they've probably done the standard  things. This kind of thing can be really hard to tease out. When you look at the foods and the fragrances and  then some of the other things that can activate mast cells include exercise, which of course, if you're an aesthetic  athlete, because we don't want people to stop exercising. Right. But it's really important not to overheat. Well,  easier said than done, right? I mean, you're in Texas. I'm sure studios down there, hopefully they have air 

Page 7 of 13 

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Transcript for Bendy Bodies Podcast, Episode 54: Managing Mast Cell Pain with Linda Bluestein, MD 

conditioning and stuff like that, but they probably get really hot certain times of the year, especially maybe the  AC can't keep up.  

25:01 

Linda Bluestein 

No matter where you are in the country, there's going to be times of year that heat is going to be a real issue,  whether you're a dancer or not. Overheating your body can also be a trigger of mast cells and so can stress.  Knowing what some of these triggers are that are very common these are the most common triggers, by the way.  Those five things that I just mentioned, stress, heat, exercise, foods and fragrances, those are five of the most  common triggers. Those are things that you want to consider. Number one is what are your triggers? And it can  be multiple things. It can be like a bucket where you just get to a point with the bucket and then it tips over,  right? It doesn't have to be one thing. It can be a combination of things. Second, we want to consider  environmental modifications.  

25:43 

Linda Bluestein 

Ideally, you're drinking out of glass or like stainless steel whenever possible. You're not using plastic containers,  especially not heating things in plastic containers. I know it's hard if you're at the studio and you need to grab  something quick to eat. Maybe they do have a microwave, you can heat up your food and maybe you are used to  bringing your food in plastic containers, but I would really recommend not doing that using glass containers.  Whenever possible, I advise my patients to use filtered water. Room temperature water sometimes can better  tolerated than sometimes people react to drinking water, believe it or not. And temperature matters. That's  something that really can matter a lot, whether it's cold or hot and it's highly variable by person, purifying your  air can be really beneficial. Of course, the no fragrance thing working with the dietitian. That's kind of part two  is these environmental modifications, a lot of which are not that difficult to do.  

26:38 

Linda Bluestein 

Number three, working one on one with the dietitian when possible and working on these dietary changes and  keeping in mind that tolerance will change over time. The goal usually is not to remove things and remove them  forevermore, but looking to see what are the things that are maybe causing you the most problem, working on  getting those maybe out of your diet and increasing other healthy things that are like antioxidants and foods that  are less likely. They contain histamine or cause histamine release. And this can be really tricky. That's why  working one on one, if you possibly can, is very beneficial. Step four is looking at medications and supplements.  That's kind of the approach that I recommend.  

27:21 

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 parse out pain and identify it. We've talked about steps that  patients can do themselves to try to mitigate the pain. How does a medical professional treat pain in the patient?  

27:39 

Linda Bluestein 

Right? I'm hoping that the first thing that they'll be looking at is why? Why are the mast cells misbehaving?  Because it can be that the person has a primary immune deficiency. In that case, we would call the mast cell  activation syndrome or mast cell disorder a secondary mast cell activation syndrome. There is a different ICD  ten code for Secondary Mast Cell Activation Syndrome as compared to Primary Mast Cell Activation  Syndrome, secondary just meaning that it's caused by something else. 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? It doesn't mean I  have one patient who has been in the ICU many times. She's pretty much on oxygen full time now and has been  on a ventilator and has had really serious infections and it was more evident in her.  

28:34 

Linda Bluestein 

It doesn't have to be that blatant. It can be much more subtle. That's the first thing that I think is really important  is to establish. Why does this person have this? We know that we're getting more and more chemicals in our  environment and if we have time, maybe we'll talk about this more, later. We're getting more and more  chemicals in our environment and we're getting more and more indoor air pollution. These chemicals can 

Page 8 of 13 

Episodes have been transcribed to improve accessibility of this information. Our best attempts have been made to ensure accuracy,  however, if you discover a possible error please notify us as soon as possible. 

Transcript for Bendy Bodies Podcast, Episode 54: Managing Mast Cell Pain with Linda Bluestein, MD 

actually cause our bodies to be intolerant of other foreign substances, basically. That can lead to mast cell  activation syndrome. 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 do we want to  run. 

29:26 

Linda Bluestein 

I mentioned tryptase already and there's a number of other different tests that can be specific for mast Cell  Activation Syndrome. There's blood tests that we can do and urine testing that we can do. There's very specific  things, there's very specific ways that the labs have to be obtained and there's very specific things that the  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. Also it's  important to know what medications and supplements to prescribe with very specific intentions. For example,  sometimes the medication needs to come from a compounding pharmacy instead of a regular pharmacy. There's  actually some antihistamines that have excipients, meaning quote unquote, inactive ingredients in them that are  actually the problem and what's causing the person to have mast cell activation.  

30:28 

Linda Bluestein 

If we instead have that medication formulated at a compounding pharmacy, we can sometimes use a different  filler and we can use a different capsule and we can actually produce that medication in a safer way for that  patient. Any physician who's listening to this podcast, we know lots of physicians do, any physician that's  listening to this podcast and wants to help people with mast Cell Activation Syndrome, which by the way,  there's lots of them out there's no shortage, and you want to help them with their pain. It's really important to go  through these steps. You really need to make friends with a compounding pharmacy. If you can really  understand and work with them so that they know and I just say talk to the patient usually knows what fillers are  safe for them, what capsules are safe for them, et cetera. That's one of the most important things is  understanding about excipients inactive ingredients and working with compounding pharmacies.  

31:27 

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?  

31:38 

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. The Hardy Mom podcast, I was interviewed  for that podcast, and I went into a lot of detail about handling medical appointments. I do have a link to that on  my website. If you're interested in checking out that interview because I don't want to take too much time right  now in terms of just appointment handling in general. It's very important to be well prepared so that you can use  the time as efficiently as possible. I really strongly suggest not going in and saying, I want an evaluation for  mast cell activation syndrome because of the fact that might be a turn off to a lot of doctors. Start with your  symptoms and your signs and symptoms are things that you are experiencing, but that are subjective, and signs  are things that other people can observe.  

32:34 

Linda Bluestein 

I strongly recommend if you get rashes, hives, swelling, anything that's visible or that other people can observe,  take pictures of that, take video, anything that can help that person in understanding what it is that you're  experiencing, because you aren't necessarily going to have this happen while you're in there. If you tend to get a  lot of flushing or whatever. I mean, 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, start getting hives all over and  it's like, well, this is going to be easy. Not that's all it takes, but it's like, wow, this is really dramatic. I've had  some really dramatic cases. Start with your symptoms and your signs. If you're nearing the end of the  appointment, you feel like you're nearing the end of the appointment and it hasn't come up, or you haven't been  able to kind of work it into the conversation yet, say, I really would like to share what I'm most worried about.  

33:33 

Linda Bluestein

I'm really worried that I have mast cell activation syndrome. If that's what it is that you're worried about, I'm  really worried or I'm really worried that I have mastocytosis. I'm really worried that I have a mast cell disorder  and I would really like to be evaluated for that. I know that this is something that is not maybe something that  you normally assess. Kind of give them a gentle out, if you will. Kind of make it so that it's more graceful for  them to say, no, this isn't something I'm really super familiar with. Make that easy for them to say that. That's  how I recommend that people approach it.  

34:08 

Jennifer Milner 

That's really helpful. It's great for people to acknowledge to the doctor in a very, as you mentioned, graceful  way. I know this is not probably not your area of expertise. This is my concern so that you are acknowledging to  the doctor, they're a part of your team. 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. That's a great, very gentle way to speak about it. If you could wave a magic wand, because this just  seems to be all over the place, right? It's like a massive game of Twister and trying to get your left foot on red  and your right hand on blue. It's just difficult. We're not even talking about curing this. We're talking about just  trying to mitigate the pain or trying to treat it.  

34:59 

Jennifer Milner 

If you could waive that magic wand, what silver bullet would show up to help with this issue?  

35:07 

Linda Bluestein 

Probably the first thing I would do is get rid of environmental toxins and pollutants. We're talking to magic  wand here, right?  

35:16 

Jennifer Milner 

Bring it on.  

35:17 

Linda Bluestein 

Yeah, you gave me permission. 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 I mentioned it briefly earlier, intoxicant 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. I've had lots of patients and clients who they 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 adhesive and foam cushions can even be problems. These  kind of things can really be problematic.  

36:20 

Linda Bluestein 

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 that under better  control. What's tricky about that I just was involved in a conversation about this recently is, okay, you can do  urine testing for mold toxins, okay? 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 that they  have high mold exposure and is causing part of their symptoms? If someone has low mold, does that mean that  they're not good at removing it or that it's not a problem? A lot of the testing that we can do, extra testing that a  lot of more traditional doctors don't do, but we need to really understand what these test results are telling us.  

37:17 

Linda Bluestein 

I feel like I keep always saying that we need more data. But it really is true. We want to eliminate things like  unnecessary medications, because sometimes, again, those have excipients. I find so often people get prescribed  a medication, then they get prescribed another medication to deal with the side effects of the first medication.  We want to address the root cause whenever we possibly can. One of the hallmark symptoms of tilt is new onset 

intolerances to structurally unrelated substances. If you're allergic to penicillin and Amoxicillin, those are  structurally related. Okay. If you're allergic to a cephalosporin, like Ancef, and you're allergic to penicillin,  those are structurally related. If you're allergic to things that are structurally unrelated, then they're calling that  the hallmark symptom of tilt. I think if I could wave a magic wand, that would be what?  

38:14 

Jennifer Milner 

Well, that would be huge.  

38:15 

Linda Bluestein 

Thanks for the wand.  

38:16 

Jennifer Milner 

All of that up at once. You're welcome. I want it back. 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, let's get to the place where  we're not having these reactions to it and we're not triggering these mast cells in an inappropriate way. So, again,  it's getting back to prevention and prehab and the thing before the hey, doc, I feel terrible, right. What we're  trying to get to so that we don't have to go in and have the hey, doc, I feel terrible conversation, right, exactly.  

38:57 

Linda Bluestein 

In some people, the response to treatment is more subtle, and it's a very long odyssey because they had a long  diagnostic odyssey, usually, and then the treatment odyssey can also be long because you want to try something  for a couple of weeks, and then you 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. The other problem is this is extremely common for people  with mast cell disorders, is their symptoms are like this. People who can't see my hand, they're up and down and  up and down. Right. One day is not the same as the next day. 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.  

39:50 

Linda Bluestein 

In mast cell disorders, it's really hard to do that because we're breathing. I know Dr. Maitland mentioned this in  her interview. We're breathing, on average, 16 to 20 times a minute, and so we're inhaling things. Mast cells, by  the way, are located in mucous membranes. They're located in our nose, in our throat, in our esophagus, in our  trachea in our lungs, all in our digestive tract, in the v*****, they're located on our skin, they're located on all of  these surfaces. Sometimes it takes a really long time to find a protocol or a combination of things that really  seems to help that person. I've had other people where they'll send me a message and I'm like, are you kidding  me? I have this one guy who was feeling quite crummy, and now he's, like, biking 30 miles a day, and I can't  believe it. He can't believe it.  

40:45 

Linda Bluestein 

Sometimes we can get really dramatic results very quickly, and other times it take a note time. 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.  

41:11 

Jennifer Milner 

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?  

41:19 

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 and then had  gastrointestinal problems as a child, all kinds of chemical sensitivities as a child, migraines as a teenager, 

gastrointestinal. I was constantly getting tested as a resident at Mayo. I was tested for porphyria multiple times. I  ultimately was diagnosed with irritable bowel syndrome, which of course, tons and tons of people, of course, are  diagnosed with irritable bowel syndrome. Even myself, I didn't put all that together as like, oh, those are all mast  cell conditions until much later on in life. It's not like you have to experience all of these things all at once,  

because I hope I'm not jinxing myself, but I no longer have asthma.  

42:19 

Linda Bluestein 

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, my reason for saying all of that is, number one, there is hope. I  no longer have chronic pain. So number one, there is hope. Do I have pain? Yes. Do I have to do a lot of  lifestyle modifications for it? Yes. Do I have pain every single day? No. So there is hope, number one. Number  two, it sometimes takes really looking at the whole lifespan of symptoms and not just like a single snapshot to establish the diagnosis.  

42:58 

Jennifer Milner 

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. Where can people find you if they want to know more about this?  

43:10 

Linda Bluestein 

So several places. It's good to start with the Hypermobilitymd.com website, and from there, of course, you can  access the podcast and all the episodes. Bendy Bodies now has services so you can work with any of us, so you  can work with me as a client through Bendy Bodies, which means basically, well, anybody can be a client.  Anybody worldwide can be a client through Bendy Bodies. There's links to contact me, there's a link to contact  Jen and there's a link to contact Kristen. People who are in Colorado or Wisconsin can become a patient. 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, I can make the diagnosis, I can prescribe medications, I  can order lab testing and all of that stuff. 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, I cannot  order medication for you, that kind of thing.  

44:19 

Linda Bluestein 

But I still make very specific suggestions. And also we're very active on Instagram. That's probably the most  common place that you'll find me, @hypermobilityMD and then also @Bendy_Bodies. We're very active on  both of those places. We do also have Bendy bodies on Facebook and Hypermobility MD on Facebook. I'm also  pretty active on Twitter. All @HypermobilityMD.  

44:44 

Jennifer Milner 

There we go. Twitter, you can find her as Hypermobility MD as well. You have been listening to Bendy Bodies  with the Hypermobility MD. Our guest today was our own Dr. 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. Thank you for sharing your wisdom with us today.  

45:11 

Linda Bluestein 

Absolutely, anytime. Thank you so much.  

45:14 

Jennifer Milner 

If you love what you have learned, follow the Bendy Bodies podcast to avoid missing future episodes. Tag us in  your story so we can connect. Our website is www.bendybodies.org and follow us on Instagram at  @bendybodies. Leaving a review following the Bendy Bodies podcast and sharing the podcast helps spread the  word about hypermobility and associated conditions. 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.