Understanding Fatigue with Alan Pocinki, MD

[00:11] Jennifer Milner: Welcome back to Bendy Bodies with the Hypermobility MD, where we explore the intersection of health and hypermobility, focusing on dancers and other aesthetic athletes. This is co-host Jennifer Milner here with the founder of the Bendy Bodies Podcast, Dr. Linda Bluestein.

[00:27] Dr. Linda Bluestein: Our goal is to bring you state-of-the-art information to help you live your best life. Please remember to always consult with your own healthcare team before making any changes to your routine.

[00:37] Jennifer Milner: Our guest today is Dr. Alan Pocinki, an internist who has been studying hypermobility disorders and related autonomic and sleep disorders for over 20 years. Dr. Pocinki, welcome to Bendy Bodies.

[01:02] Alan Pocinki, MD: Thank you, happy to be here.

[01:02] Jennifer Milner: You have specialized in this field for quite a while now, and one of the interesting things about hypermobility and the associated disorders is that there's no one single clear path to becoming a specialist. We would love to hear what got you started in this particular field.

[01:24] Alan Pocinki, MD: Well, I'm a general internist by training. I happened to fall into a study of chronic fatigue syndrome in the mid-'80s when this was a just-evolving concept. And over the next 15 years or so, I gradually sort of recognized all the pieces of that paradigm. By around 2000 probably, there was one eureka moment where I realized that all of my chronic fatigue syndrome patients were hypermobile. And as I learned more about the hypermobility syndromes, I realized that that accounted for a large number of the symptoms in the CFS population.
[02:07] So then I started looking into — early on in the days of CFS, early '90s, I hate to say — it was pretty obvious that people with any sort of chronic fatigue, at least by and large, the vast majority of the ones I was seeing, that their fatigue would never get better unless they got a restful night's sleep. And trying to figure out exactly what was wrong with their sleep and why they woke up unrefreshed even after what seemed like a decent amount of sleep.
[02:27] And then again, this century, sort of seeing how all these pieces fit together, I connected with some people in the Ehlers-Danlos community and recognized that they had many of the same features — their patterns of autonomic dysfunction, their patterns of non-restorative sleep — they looked very similar to the chronic fatigue syndrome patients. And then I fell in with some of the dysautonomia community as well, because each of those groups — as you alluded to — there is no training program for people in this field. So the people attracted to this field have a genetics background, or a rheumatology background, or a background in one area, but folks who are geneticists have no training in management of sleep disorders, for example.
[03:25] So as a general internist, these things sort of appeal to me and seem like a classic internist's condition — to recognize and manage these overlapping conditions.

[03:39] Jennifer Milner: Well, and I think that's a common theme we've seen with a lot of the people we've spoken to, whether it's a rheumatologist or a GI specialist or whoever it is — they start pulling on one thread and then it starts to pull these other things, and then it goes to this, and then it goes to this. We see that so many times with all the common comorbidities that sort of show up at the same time. And that's why it's really hard to have that one specialty that you can say, this is how you dig deep into hypermobility, follow this one path.
[04:11] So today we want to focus on hypermobility and fatigue. If we could start with just some definitions — what is fatigue? When we're talking about fatigue, what are we talking about?

[04:21] Alan Pocinki, MD: Well, I think at a very basic level, fatigue is the inability or difficulty accomplishing simple tasks. If you can't walk a block, if you can't walk up a flight of stairs. And the important distinction that we often make is between fatigue and sleepiness. In these conditions, a lot of people have both. But physical fatigue — that is, your legs are too weak or your body's too weak, or you tire out so quickly that you can't accomplish simple tasks — we distinguish that from somebody who, say, has untreated sleep apnea, who could be sleepy all the time, but when they're awake are able to function normally and do physical tasks.

[05:04] Dr. Linda Bluestein: Okay, that's really helpful. And what sort of links do you see between hypermobility disorders and fatigue?

[05:11] Alan Pocinki, MD: I guess the initial link was recognizing that a lot of patients with chronic fatigue as the primary symptom were hypermobile. And then I know that Rodney Graham's group in the UK, when they looked at presenting symptoms or chief complaints in a year's worth of Ehlers-Danlos patients, their number one complaint was pain, but their number two symptom was fatigue. And I think that was surprising to a lot of the specialists who were focused on individual body organ systems.
[05:46] I think the very first Ehlers-Danlos meeting I went to, Howard Levy from Hopkins gave the opening plenary talk and made these comments — with a mention that even though fatigue was so common, it wasn't quite clear why people with Ehlers-Danlos syndrome had such a problem with it. And I thought it was pretty obvious, having worked with similar patient groups, that their sleep was awful, and chronic pain — their most common symptom — is a common cause of fatigue.
[06:15] And certainly in terms of disability, most of the patients I see who are limited in their ability, say, to work — it's not pain or an upset stomach that keeps them from being able to work. It's that they just can't accomplish physical and cognitive tasks because they just don't have the energy.

[06:36] Dr. Linda Bluestein: Sure. So underlying causes of fatigue in these populations would be disordered sleep, for sure — that makes sense — and chronic pain. Are there other things that you think contribute to fatigue besides those?

[06:52] Alan Pocinki, MD: Well, depression is the other piece. I often talk about the vicious cycle of chronic pain, poor sleep, depression, and fatigue, because each one of those aggravates the others. Again, in our specialty-focused medicine in this country, patients may see a psychiatrist about their depression, but the psychiatrist doesn't know anything about managing chronic pain and probably doesn't know anything about how to fix the sleep. Certainly pain specialists, similarly — I've been surprised there are even pain specialists who say they're not comfortable prescribing antidepressants. It's like, how can you be a pain specialist and not prescribe antidepressants? Because in my patient population, these two things just go hand in hand.
[07:34] I do often reassure people that depression in this context is sort of part and parcel of their illness, and it's not any kind of implication that they have a personality disorder or that they're not coping well. What I typically tell them is it's just chronic illness — chronic pain depletes your feel-good neurotransmitters, and you end up being depressed and irritable, with trouble concentrating and lack of motivation. All those things we see as cardinal features of depression.
[08:05] Beyond that vicious cycle, certainly there are a host of metabolic factors that can contribute to fatigue. Common ones I see are deficiencies in vitamin D, vitamin B12, and magnesium. I see a lot of patients — especially young women — who are testosterone deficient, and I think that's a factor in fatigue and a number of their symptoms in this subgroup of patients.
[08:30] In the big picture, simple tasks are tiring for hypermobile people. When they go for a walk, I often reassure people: when you go for a walk with your spouse, you're doing twice as much work as they are, because with each step your joints are slipping and sliding and your muscles are doing extra work. Even simpler — I use the illustration of opening a heavy door. For most people, it's not a big deal. They push on the door and lock their wrist, lock their shoulder, lock their shoulder blade, lock their rib cage, and push. But if all those joints are unstable — and I've seen patients coming into my own office lean against the door with their shoulder because they can't open it otherwise — very simple tasks become extra work.
[09:20] And then the other piece, somewhat ironically, is autonomic dysfunction itself, which tends to be both a cause and an effect of fatigue. The body's inability to maintain an even keel, exaggerated stress responses and then overcorrections and recorrections — what I call the autonomic roller coaster — wastes a lot of energy. If you're lightheaded every time you stand up, your body kicks in too much adrenaline to correct for that. Those simple things are tiring. And then, unfortunately, in a sort of paradox, the more rundown and overtired you get, the worse your autonomic dysfunction tends to be. And indirectly, I think autonomic dysfunction is a major player in poor sleep quality. So it's also a big factor in fatigue.

[10:04] Jennifer Milner: So speaking about sleep — you've talked about how being sleepy is different from fatigue. What role does sleep play in fatigue, and in this population especially, with having trouble getting what seemed like a good night's sleep?

[10:26] Alan Pocinki, MD: I think it's a huge factor. Sleep and pain are the two major things that perpetuate fatigue. And we know from sleep studies that these patients just don't get a restful night's sleep. They may fall asleep and sleep through the night okay, but often they're spending little or no time in deep sleep. Often the continuity of their sleep is disrupted 100 times or more in 7 or 8 hours of sleep. So it's a huge factor in perpetuating fatigue. As I said earlier, you can address all the other issues people are having, but if they can't get a decent night's sleep, it's going to be hard for their level of fatigue to improve.
[11:00] And the whole concept of non-restorative sleep — somebody who's merely sleepy can sleep and wake up and feel somewhat refreshed, but in these syndromes, people find it incredibly frustrating that they wake up and feel like they haven't slept at all.
[11:14] I like to use the metaphor of suggesting to patients that their body has a fuel tank — an energy reserve — and that sleep is their major chance to put gas in the tank. So many other stresses that they deal with every day are depleting their energy. If sleep isn't restful, and there's pain, and household or school or other stresses — if they're lightheaded every time they stand up, if their blood sugar is fluctuating — all these things are draining their energy. Most of these people, when I say, here's what's putting gas in your tank and here's all the things that are taking energy out, it's no wonder that every day you're kind of net negative. And after years of being in this cycle, you're exhausted.

[12:04] Dr. Linda Bluestein: That's actually a great analogy. And I have a question about exercise in that context, because I feel like for people who do not experience these conditions, exercise and movement actually does help add fuel to the tank. But maybe because of joint instability and a variety of other factors — pain or what have you — for people with hypermobility disorders, exercise may have the opposite effect depending on where they are metabolically or otherwise. Do you see that?

[12:38] Alan Pocinki, MD: Yeah. I think the larger issue here is what we talk about as budgeting your energy and walking that tightrope of trying to do as much as you can every day without doing too much. Exercise is a good example. A lot of my more fatigued patients will say, well, I'm exhausted, I can't exercise. My usual response is, how about lying in bed? Okay, I can do that. I'm good at that. I say, okay, well, so lie in bed and move your arms and legs around for a few seconds a few times a day.
[13:10] But it's difficult because one of the other pitfalls that can easily entrap people is that as they start exercising, that tends to boost adrenaline levels. It can kick in endorphins and other things and can mask their pain and fatigue. They don't realize that they're pushing too hard and they should be stopping to rest. So exercise is critical, but not doing too much is just as critical. And a lot of people, when you say they need to exercise, think you're telling them to go to the gym for an hour. If you say no — lie on your back and do a bicycling thing with your legs for 30 seconds — just do something and do it fairly consistently. And if you have problems with lightheadedness, then start with exercising flat on your back. So yeah, exercise is critical to getting people better, but it's got to be done carefully.

[14:05] Jennifer Milner: Well, and one of the things you touched on briefly earlier was depression and being part of that vicious cycle. I know that you presented a webinar called "Psychiatric Misdiagnoses in EDS: When Is Anxiety Not Anxiety?" We know a lot of people with hypermobile disorders often have anxiety, depression, things like that. So what role does anxiety play in fatigue?

[14:31] Alan Pocinki, MD: Well, the major point of that webinar was that I see a lot of patients whose physicians have mistaken their exaggerated sympathetic adrenaline fight-or-flight stress response for anxiety. If your body makes a surge of adrenaline because your blood sugar's just crashed, or because you're overtired, or because you're in pain, you can have all the symptoms of a panic attack. And so unfortunately, the way these things are diagnosed — the DSM-5 criteria — you can say, well, yeah, I did have chest tightness, I did have shortness of breath, I did have heart racing, I did kind of feel clammy and sweaty. And then you say, okay, well, you just had a panic attack and you must have some underlying anxiety disorder.
[15:20] So there are some people who do have anxiety. They're worried about their health. They often have family stresses, financial stresses, school — a situational or appropriate level of anxiety. But in particular, mistaking these acute episodes for panic or anxiety is a problem. And some patients will come right out and say, you know, I get these panic attacks, but I'm really not anxious. I'm not upset. And unfortunately, the English language doesn't have a great other word for this. I tend to call it jitteriness and ask, do you feel jittery? Some people will say, oh yeah, it's definitely physical — it's not psychological when I have these panic attacks. And it's like, okay, well, let's stop calling them panic attacks. Let's call them adrenaline surges or something.

[16:09] Jennifer Milner: So if I'm understanding you correctly, the basis of the paper was looking at it from a dysautonomic point of view rather than from an anxiety standpoint. Is that correct?

[16:20] Alan Pocinki, MD: Right, right. And even the very first time I gave this talk, some parents came up to me afterwards and said things like, that was really interesting because once we got my daughter's sleep problems under control, she didn't have anxiety anymore. Once my son's pain was adequately controlled, he didn't have anxiety or ADD anymore.

[16:45] Jennifer Milner: That's really interesting. I'm sitting here processing that because as much as we talk about all the comorbidities going together, it's really interesting to think about how just switching the way that you approach it slightly may have a huge impact on how your day-to-day life goes.

[17:03] Alan Pocinki, MD: Right. And unfortunately, some of these patients are even diagnosed as bipolar, and it's really hard to get that out of their medical records. So there are other unfortunate implications to these misdiagnoses.

[17:21] Jennifer Milner: Well, we've covered several things that kind of go along with fatigue. Are there any other symptoms that commonly co-occur with fatigue that we haven't talked about?

[17:30] Alan Pocinki, MD: Well, the whole collection of mast cell dysfunction and the symptoms that go along with that are common — we commonly see it in association with hypermobility syndromes and the dysautonomias — and mast cell dysfunction can aggravate fatigue, pain, autonomic dysfunction. So that's probably the other big one I can think of.

[18:00] Jennifer Milner: No, that's okay. I just have this picture in my head of soup, and every different ingredient that gets added to it — you can't parse the ingredients back out. They all just form this one soup, which is the person.

[18:12] Alan Pocinki, MD: Right, that sounds right. What I often say to patients is the challenge for me is not so much putting all the pieces of the puzzle together, but figuring out which pieces go in which puzzle.

[18:22] Jennifer Milner: I love that. Can you say that one more time?

[18:24] Dr. Linda Bluestein: I was going to ask you to say that again because I—

[18:27] Alan Pocinki, MD: Sure. What I often explain to patients is the challenge of trying to evaluate their condition and set up a treatment plan is not so much trying to put all the pieces of the puzzle together, but trying to figure out which pieces go in which puzzle.

[18:45] Dr. Linda Bluestein: Oh, I like that. That's really good.

[18:49] Alan Pocinki, MD: And that's unfortunately why a lot of physicians — it's why we can't always attract other physicians to this field.

[18:56] Dr. Linda Bluestein: We've gotten some through the podcast, actually. We've gotten some physicians who have listened to the podcast and contacted us and have started to notice more of these patients in their practice. You reach people in a variety of different ways. I'm sure you've had many people come to your presentations and talks or read your articles. And awareness is improving, but obviously we have a long ways to go.

[19:26] Alan Pocinki, MD: Yeah, that's obviously the hope — that physicians will recognize somebody like this in their practice and say, oh gee, I think they may have this, maybe I have 2 or 3 other people with something like this, I need to learn more about this. Doesn't happen as often as we'd like.

[19:41] Dr. Linda Bluestein: Sure.

[19:41] Jennifer Milner: Well, I am seeing it happen though. One of my dancers was diagnosed with EDS, and her mom is an internist. And her mom, in the journey of finding support for her daughter and digging through it, has gone back through her records and is calling all of these patients back into her practice and going, I've learned some things, let's talk about this. So the more information is out there, the better.

[20:05] Alan Pocinki, MD: I remember one of the first patients I saw with dysautonomia and the first patient I saw with mast cell disorders, back in 1991. One of these people actually moved away for 15 years and then came back. And when she came back, she said, "Do you remember me?" I said, "No, I don't remember you, but now I can explain to you why your blood pressure would go from 110 over 70 to 170 over 110." I explain that to people all the time — that I'm constantly trying to learn more things and adapting the way that I practice and what I prescribe and how I prescribe it.

[20:42] Dr. Linda Bluestein: And hopefully, care will continue to improve as we learn more and more.

[20:51] Alan Pocinki, MD: I guess a postscript to your question about how I came to be an expert in this is: I learned from my patients. I only gradually realized that most of my migraine patients are hypermobile. Most people with varicose veins are hypermobile. And some people would come in asking, "Why do I bruise so easily?" And I said, "Well, do you have this? Do you have this? Do you have that?" And they'd say, "Yeah, how do you know all those things?" I said, "Well, because medicine's about pattern recognition."
[21:19] And in fact, when I went to the first few Ehlers-Danlos meetings, I jokingly mentioned to some of the geneticists — I'm a general internist. I don't have a sign over my door that says if you can put your foot behind your head you should come and see me. These are just people in my general medical practice who come in with symptoms that end up being related to joint and tissue laxity.

[21:42] Dr. Linda Bluestein: Yeah, that makes sense. And I want to circle back to what you were saying earlier about bipolar disorder and potentially some people being misdiagnosed. I know there were some studies done a number of years ago that did look at the overlap between bipolar and hypermobility disorders, Ehlers-Danlos, etc. So that's actually a really interesting thought — does somebody present as if they might have bipolar, but actually the underlying cause of some of those symptoms is the dysautonomia or something else? Can you elaborate on that a little bit more?

[22:18] Alan Pocinki, MD: Well, similarly, there are studies showing an increased incidence of anxiety in the hypermobility population. And my question is, have these people been evaluated for autonomic dysfunction? Just because they satisfy the DSM criteria for anxiety doesn't really mean they have psychiatric problems — it's just the way these conditions are defined symptomatically.
[22:41] Certainly I've seen people who will present with typical symptoms of mania. For the last 2 nights, I hardly slept at all and I got so much done. I was up all night cleaning the house and doing the laundry. And you say, okay, that sounds like you were manic. And they say, no, actually I was exhausted — I was running on adrenaline. So yeah, it's tricky.
[23:08] I've seen some people who said, oh yeah, 10 years ago they diagnosed me with bipolar, and it's obvious I don't have that. And finally people are willing to believe that I don't have that. Or, once I got my pain treated appropriately or started getting more restful sleep, I stopped having these so-called manic episodes.
[23:27] Now there are some patients I see who have both, and that's very difficult to tease out. There was one woman who I struggled to get a more restful night's sleep for a while. We tried probably half a dozen things. And finally I said, well, the medications that usually work for people like you aren't working. Maybe this really is psychiatric — what do you think? She said, well, haven't I told you that my brother and my dad were both bipolar? I was like, no, you never told me that. I should have asked, I guess. But that was kind of the exception that proves the rule. I think based on the symptomatology, some of the dysautonomia symptoms could easily be mistaken for psychiatric symptoms.

[25:15] Dr. Linda Bluestein: Absolutely. And it's interesting too, because one of the most anxiety-provoking things is going into a doctor and being either told directly or having somebody imply that you're crazy or lazy or whatever. Whereas—

[25:27] Alan Pocinki, MD: You can't possibly have all these symptoms, so you must be making them up.

[25:35] Dr. Linda Bluestein: Right, right. And it's very disarming of the anxiety when somebody believes you and says, I have a plan and I think I know why you feel this way. And I also feel like anxiety can feed on itself — you can get anxious about being anxious.

[25:51] Alan Pocinki, MD: Right, right. Certainly the analogous sleep situation is what I call anticipatory insomnia. You don't sleep well, you worry about not sleeping well, and that just makes it worse.

[26:00] Dr. Linda Bluestein: Right, definitely. So we know that in 2017, the International Consortium reclassified the Ehlers-Danlos syndromes, came up with stricter criteria for hypermobile EDS, and also came up with the new classification of hypermobility spectrum disorders. And in coming up with these criteria, they kind of left out the comorbidities. But I would love to hear, in your practice and your experience, do you see any difference in terms of the symptom of fatigue in people who would be more likely to meet the criteria for hypermobile EDS versus people who are more likely to meet the criteria for hypermobility spectrum disorder?

[26:46] Alan Pocinki, MD: No, I really don't. I mean, this is when I get to fall back on saying I'm a clinician, so it doesn't matter to me whether somebody's a couple of inches on one side of the line or a couple of inches on the other. We certainly see a lot of people who fall one criterion short of meeting the new criteria, and that clearly doesn't change what they have.
[27:10] If you want to call it generalized hypermobility spectrum disorder, you want to call it hypermobile EDS — I tend to tell people that for all intents and purposes, this is EDS. Because if you go online and try to find resources or information about hypermobility spectrum disorder, you're not going to find much. But fortunately, now there's a lot of information about Ehlers-Danlos. And just don't sweat the fact that these new criteria were designed as entry criteria for research protocols. As long as you're not trying to get into a research study, nobody's going to, you know, make it matter.
[27:45] And even for things like disability or FMLA forms for employers, Ehlers-Danlos is something somebody who doesn't know about it could look up and say, oh gee, okay, I get it. They see HSD on a form and they go elsewhere. So I don't find the distinction clinically helpful.
[28:08] And some of us are kind of hoping that the criteria will be revised. When they were first created, the idea was that it was going to be a working document, and that as time went on, if we saw it was excluding a lot of people, we might revise them. I don't know what the status of that is. Certainly the patients who don't quite meet the criteria seem to have just as many of the comorbidities and are certainly no less ill. I have patients who do meet the criteria who are able to work full-time. I have patients who don't meet the criteria who are disabled.

[28:43] Dr. Linda Bluestein: And a lot of people, I think, learn about Ehlers-Danlos syndromes, and then if they go in for an appointment and somebody actually does take a look and assess them and says, no, you don't meet the criteria even for the hypermobile type, and we don't suspect another type — I think in some cases they do feel like they're going to miss out on coverage for some insurance things and/or not being taken seriously by their other providers. And in some cases it can affect how seriously the family even takes you. We keep getting told over and over again that it's not a lesser diagnosis, but perception is everything.

[29:22] Alan Pocinki, MD: Yeah. And obviously there are still other physicians who say, well, if you haven't had the genetic test, then you don't have it. And there is no genetic test. I get into arguments with specialists — orthopedists or rheumatologists who see my patients — who say, "You're not hypermobile at all." It's like, well, yeah, actually they are.
[29:48] A rheumatologist recently told one of my patients that it was impossible to sublux your hip. She'd never seen anybody with a subluxed hip. And I was like, I'd probably see somebody every day with a subluxed hip. So there's still some professional education we need to do.

[30:03] Jennifer Milner: For sure.

[30:04] Dr. Linda Bluestein: Definitely. And in terms of treatments for fatigue — you've mentioned one of them, which is getting better sleep. But of course there are different treatments for improving someone's sleep. Can you shed some light on how you approach the treatment aspect of these conditions in your patients?

[30:23] Alan Pocinki, MD: Well, as we talked about, there are certainly numerous causes. So going through a very thorough evaluation to identify which causes are most relevant in a particular patient is going to guide your treatment approach.
[30:33] Going back to the big ones — a lot of patients I see come in not on any kind of pain medication. And there's a syndrome or phenomenon that I refer to as background pain, where you've been in chronic pain for so long that you're no longer consciously aware of it. A lot of people don't realize how much pain they're in. And with all the hue and cry about the opioid crisis, I see lots of people whose pain is undertreated. You get their pain under control, their sleep improves, their mood improves, their fatigue improves.
[31:20] Sometimes the patients are even reluctant to take medication they need. I'll have to bargain with them and say, here's a prescription for 5 or 6 pills — take a pain pill at bedtime every night for a few nights and see whether you sleep better or not, because that's the easiest way to see how much pain is really disrupting your sleep.
[31:39] So again, different issues for different people. But focusing on pain and sleep and mood, and the idea that that vicious cycle is not going to get better unless you address all those issues — your depression will never get better as long as you're in pain, your pain will never get better as long as you're depressed, your sleep will never get better if you're depressed and in pain.
And as I said, the first thing I do when seeing a new patient is go over with them how the pieces all fit together and reassure them that they're not imagining this stuff. There's a reason why you have this symptom, there's a reason this happens when you do this, and there is a treatment program we can set up that hopefully will relieve some of your symptoms.

[32:27] Dr. Linda Bluestein: And I would love to circle back to hormones, because you had mentioned testosterone. So how do you approach that in terms of working up people and treating?

[32:39] Alan Pocinki, MD: Well, this is something I happened to notice probably 7 or 8 years ago now. A half dozen college-age women — we'd worked on their sleep, we worked on their pain, we worked on their mood. They were feeling better, they were sleeping better, they had more energy, they were getting more exercise. And they just weren't building muscle. They weren't getting stronger. Their joints weren't getting more stable even though they were going to the gym for an hour 5 days a week.
[33:07] And I said, well, exercise physiology is not my field, but it seems to me that you don't need too much to build muscle except exercise and protein and testosterone. So I measured these women's testosterone levels, and lo and behold, they were extremely low. And then I had no luck at all finding either an endocrinologist or a gynecologist who was willing to treat these people, because the conventional wisdom in those fields is that the problem doesn't even exist. I mean, out of 60,000 ICD-10 codes, there isn't a code for testosterone deficiency in women. And the conventional wisdom is we shouldn't be measuring these levels because you don't really know what normal and abnormal is — so we'll just pretend it doesn't exist.
[34:00] But if the NIH norms are 15 to 75, and you're a healthy 19-year-old with a level of 6, that's got to be part of the reason you don't feel well and are having trouble with motivation and are especially having trouble building muscle.
[34:18] Not being a gynecologist or an endocrinologist, I didn't feel qualified to prescribe testosterone to these women. So I would usually recommend that they take DHEA, which is available over the counter and which the body can convert into estrogen and testosterone as it sees fit — with a number of safety margins there.
[34:38] I actually just saw somebody yesterday who just looks so much better. I made the analogy — probably one you didn't appreciate — of veterinarians looking at a dog and saying, oh, this is a very healthy dog, look how shiny their coat is. I said, your skin tone and the sheen of your hair and your muscle tone are just so much better than when I saw you 3 months ago. It was just dramatic.
And similarly, I had one young woman we started on this, and when she came back 3 months later, I was worried I'd given her too much — it was like she'd suddenly built a lot of muscle in a short period of time. So again, I often joke, I'm a clinician, I get to make these observations. Somebody smarter than me has to figure out what's really going on here. And these are not opioids — opioids could suppress testosterone — and these were not people who were taking opioids. So I think there's something going on there.
[35:37] Clearly something I've mentioned in a couple of recent talks has been apparent dysfunction in the HPA axis and cortisol secretion. I see people where — my best speculation about this is that, just the way the central feature of dysautonomia is an exaggerated stress response, an exaggerated sympathetic adrenaline stress response — cortisol is really your body's other major stress hormone. And if you're making too much adrenaline in response to some kind of acute stress, you're probably making an excessive cortisol surge too.
[36:16] And because these surges, like the bump in adrenaline levels, are probably transient, the odds of having a blood test and catching one are pretty slim. I've had a few people where we've done blood tests half a dozen times and seen not only normal levels but often low cortisol levels. And I've had to say, look, you're 275 pounds, you clearly don't have adrenal insufficiency, you look like you have too much cortisol, not too little. And finally, on the 5th or 6th blood test, we'd see a really high cortisol level. And if you look at symptoms and clinical manifestations of excessive cortisol, one of the big ones is fatigue. So it all kind of loops back.
[36:59] Again, these are syndromes I've tried to explain to various endocrinologists, and this just doesn't compute for them — it doesn't fit in any paradigm they've encountered before. But clinically it makes sense to me.

[37:13] Jennifer Milner: Especially looking at it with dysautonomia and how it all ties together. So if there are any researchers out there listening, here's a good one for you.

[37:25] Alan Pocinki, MD: Right. If only somebody like Bill Gates had a family member with Addison's disease — and if these patients could finger-stick their cortisol levels, both the ones who are truly adrenal insufficient and are trying to manage their cortisol replacement by guessing, but also some of these people who I think clearly have fluctuating cortisol levels — that would be really helpful.
[37:59] Years ago, I remember talking to one of the top mast cell doctors about how difficult it was to find abnormal blood tests. You know, you'd really increase your yield by running off to the lab whenever you wake up covered in hives — quickly run off and then maybe your levels will be high. And I asked him, do you ever have any patients who intentionally trigger some kind of reaction to improve the yield of their testing? And his response was, no comment.
That's another area where — Linda, you remember the PT at last week's EDS conference?

[38:39] Jennifer Milner: Yeah.

[38:40] Alan Pocinki, MD: She was asking about a patient who looks like she has mast cell problems — adding cromolyn really helped, but all of her mast cell testing has been negative so far. And I sent her an email saying that's the rule, not the exception. The people who have elevated mast cell markers are relatively uncommon, and it's an analogous situation to the HSD situation where I say, clinically this is obviously what you have. You take cromolyn and a bunch of your symptoms improve — this is obviously a mast cell problem. And even if all your so-called tests for mast cell come up negative, that doesn't really change what you have.

[39:16] Jennifer Milner: That's true. And we have had other guests on the podcast who have said the exact same thing. I think it was an immunologist who was talking about how the blood tests are something she tries not to use as the gold standard because it's so difficult to find what you're looking for sometimes. And as you said, it could be 8 different results if you do 8 different tests in one day.

[39:44] Alan Pocinki, MD: Right. And the whole — while it was nice, the paper about the hereditary alpha tryptasemia was nice to say, okay, these people aren't imagining this, they really do have elevated tryptase levels — then somehow that morphed into, oh, your tryptase levels are normal, you must not have mast cell problems. I try to explain to people: no, we would actually expect your tryptase levels to be normal in the vast majority of cases.

[40:08] Jennifer Milner: Well, this is clearly an area that needs a lot of research. Is there any other area where you would like to see research on fatigue and hypermobility?

[40:19] Alan Pocinki, MD: Well, I think the biggest thing I've hoped for for years is that somebody will try to figure out how to fix what's wrong with their sleep. I mean, the pattern is pretty consistent — they have little or no deep sleep and they have frequent so-called spontaneous arousals. I just assume this is mostly because their sympathetic tone is too high, and that's how I've treated it. But is this a circadian rhythm disorder where their body is just out of sync and thinks they should be awake when they should be asleep?
[40:50] Unfortunately, the conventional wisdom in the sleep community is that sleep is regulated at a cortical level, that it's not under autonomic control. And that clearly doesn't seem to be the case in these patients, where tinkering with their autonomics affects their sleep quality and their sleep architecture. And this is not a subjective thing — this is something you can measure in the sleep lab.
[41:22] I literally saw one patient this week — he's chronically tired. He's a man in his mid-50s, an attorney who's having cognitive issues. I explained to him: you're exhausted. This is all fatigue. Your trouble following complicated material, your trouble with decision-making, anything analytical, higher executive functions — this is all fatigue. This is not the beginning of Alzheimer's. This is because you haven't had a restful night's sleep in decades.
[41:53] So he finally went and had a sleep study. He had mild sleep apnea — an AHI of 9 or 10. Normal is up to 5; 5 to 15 is mild. He was fitted with a CPAP mask and the pressure was adjusted until he had no apnea. But even with the mask on and his apnea eliminated, he still had 84 arousals and 13 awakenings in less than 5 hours of sleep.

Jennifer Milner: Wow.

[42:19] Alan Pocinki, MD: And the idea that — gee, you might have mild apnea and it's important to treat it, but there's another sleep problem going on here — completely escaped the board-certified sleep physician who read his sleep study. He said the apnea is well controlled. In fact, the patient spent 0.2% of his night in deep sleep. He had essentially no deep sleep even after apnea was completely eliminated. And again, that's a professional education issue — somebody needs to recognize this pattern. And this is something I've described for probably close to 20 years now, and sleep doctors still just don't get it.
[43:12] So that's really where research would help the most. People are working on the autonomics and some of the other issues, but people go to top sleep labs in the country, and one of them very sadly went to probably the top sleep lab in the country and was told, you just have chronic insomnia and there's nothing really you can do about it. You know, the worst thing you can tell somebody with a chronic illness is that nothing can be done for them.
[43:44] So yeah, if I had some money to direct toward research, that's where it would go. I'm kind of hoping that some of the long COVID money might go into that area, but I haven't seen any of that yet.

[43:57] Jennifer Milner: I'm hopeful, because I've learned a lot just from our conversation here. And the changes that I've seen with hypermobility — how visible it is at least in the dance world and in the dance medicine circles I'm in — it's encouraging. I think it's leapt forward so much. And 10 years from now, we'll look back on this podcast and be like, remember when we didn't even have a sleep study on this? We'll be like, yeah, that was the dark ages because we will have done so much.

[44:30] Alan Pocinki, MD: Yeah. The internet is a great thing. When I wrote up a little paper in 2010 for my patients to share with their families about what their different symptoms were like and how they all fit together, I wouldn't have dreamed for a minute that that paper would still be flying around the internet 10 years later. And the number of people who found that helpful and said, oh man, how does this guy know all this about me? I've never met him. So the internet has been great.
[44:59] And I think the only downside is that our major progress in the last decade has clearly been in public awareness, patient education, and some increase in professional awareness — especially in the physical therapy community more than the physician community. But the flip side of that is there hasn't been much research in terms of — I mean, I often say to patients, it's 2022 now. We have essentially one new pain medicine, one new antidepressant, and one new sleeping pill this decade — or this century, really. There just haven't been any advances in basic stuff. You turn on the TV and there's the latest monoclonal antibody for this or that obscure illness. Meanwhile, insomnia and depression and pain are major issues that millions and millions of people suffer with, and there's nothing new to offer them. So not to end on a down note, but—

[45:52] Dr. Linda Bluestein: No, but that's such a great point. And I have to confess, I hadn't really thought about it in those terms before — when I see an ad for some more obscure thing. And if we could get more people to be able to work and be productive members of society, and get the meaning that comes from being able to work and contribute — man, that would be just such a huge thing for society at large.

[46:19] Alan Pocinki, MD: I'm just interested in pharmacogenetics and the idea that different people metabolize drugs differently. If you're a poor CYP2D6 metabolizer, or intermediate — which is pretty common, almost half the population — that eliminates half the opioids. Oxycodone and hydrocodone aren't going to be effective for you. You're left with fentanyl, buprenorphine, morphine — just a few options. And then if you get a rash from this one and that one causes this problem, suddenly you have almost nothing left. It's just very frustrating.

[46:52] Jennifer Milner: Well, you have given us a lot to think about today. I really appreciate your sharing your expertise on this. Was there anything we didn't touch on that you wanted to cover?

[47:04] Alan Pocinki, MD: No, I don't think so. I'll probably think of something later tonight. But this kind of thing is great — I'm happy to spend an hour of my time knowing just how many people will get some benefit out of this. There's such a small number of people I can actually see in the office and help one-on-one. But a lot of people, fortunately, are able to take some of these ideas and hopefully take them to their physicians and say, how about this, or have you ever thought about this, or have you ever tested that? And maybe make some progress.

[47:30] Jennifer Milner: That is our hope.

[47:33] Alan Pocinki, MD: And thank you both for all your effort — this takes a lot on your part too, obviously.

[47:39] Jennifer Milner: Well, we are grateful for your time and hope that it reaches our listeners, as you said, and can do some good. You have been listening to Bendy Bodies with the Hypermobility MD, and today we have been speaking with Dr. Alan Pocinki. Dr. Pocinki, thank you so much for sharing your expertise with us today.

[47:55] Alan Pocinki, MD: Thank you, my pleasure.

[47:55] Dr. Linda Bluestein: Thank you so much.

Alan Pocinki, MD: Bye-bye.

[47:55] Dr. Linda Bluestein: Thank you for joining us for this episode of Bendy Bodies with the Hypermobility MD, where we explore the intersection of health and hypermobility for dancers and other aesthetic athletes. If you found this information valuable, please share it with a colleague or friend and leave us a review on your favorite podcast player. Remember to subscribe so you won't miss future episodes.
[48:21] If you want to follow us on Instagram, it's @bendy_bodies, and our website is www.bendybodies.org. If you want to follow Bendy Bodies founder and co-host Dr. Bluestein on Instagram, it's @hypermobilitymd, all one word, and her website is www.hypermobilitymd.com. If you want to follow co-host Jennifer Milner on Instagram, it's @Jennifer.Milner, M-I-L-N-E-R, and her website is www.jennifer-milner.com.
[48:59] Thank you for helping us spread the word about hypermobility and associated conditions. We want to hear from you. Please email us at [email protected] to share feedback. The thoughts and opinions expressed on this podcast are solely those of the co-hosts and their guests. They do not necessarily represent the views and opinions of any organization. The thoughts and opinions do not constitute medical advice and should not be used in any legal capacity whatsoever. This information is not intended to diagnose, treat, cure, or prevent any disease, as this information 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'll catch you next time on the Bendy Bodies Podcast.