45. Understanding Fatigue with Alan Pocinki, MD

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00:00
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. 

00:15
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. 

00:25
Jennifer Milner
You our guest today is Dr. Alan Posinki, an internist who has been studying hypermobility disorders and related autonomic and sleep disorders for over 20 years. Dr. Posinki. Welcome to bendy bodies. 

00:50
Dr. Alana Pocinki
Thank you. Happy to be here. 

00:53
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. And we would love to hear sort of what got you started in this particular field. 

01:12
Dr. Alana Pocinki
Well, I'm a general internist by training, happened to fall into a study of chronic fatigue syndrome in the mid 80s, when this was just evolving concept. And over the next 15 years or so, gradually you sort of recognize all the pieces of that paradigm. And by, I don't know, 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 accounted for large number of the symptoms in the CFS population. So then I started looking into early on in the days of CFS, early ninety s. 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. 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. 

02:21
Dr. Alana Pocinki
And then again this century, sort of seeing how all these pieces fit together. I connected with some people in the Ehler. Stanley's community and recognized that they had many of the same features. Their patterns of autonomic dysfunction, their patterns of non restorative sleep looked very similar to the chronic fatigue syndrome patients. And then I fell in with some of the disauthenomia community as well, because each of those groups, as you sort of alluded to, there is no training program for people in this field. So the people attracted to this field have a genetics background, or have a rheumatology background, or have a background in one area, but have no folks who are geneticists, have no training in management of sleep disorders, for example. So as a general internist, these things sort of appeal to me and seem like just sort of a classic internist condition to recognize and manage these overlapping conditions well. 

03:28
Jennifer Milner
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 one thread and then it starts to pull these other things, and then it goes to this. And we see that so many times, 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. So today we want to focus on hypermobility and fatigue. If we could start with just some definitions. So what is fatigue? When we're talking about fatigue, what are we talking about? 

04:10
Dr. Alana Pocinki
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 I guess 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 is really 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. 

04:52
Dr. Linda Bluestein
Okay, that's really helpful. And what sort of links do you see between hypermobility disorders and fatigue? 

04:59
Dr. Alana Pocinki
I guess, as I said, the initial link was recognizing that a lot of patients with chronic fatigue as the primary symptoms were hypermobile. And then I know the Rodney Graham's group in the UK. When they looked at presenting symptoms or chief complaints in a year's worth of Danlos patients, their number one complaint, their number one symptom 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. And I think the very first Ellers Danlos meeting I went to, I think Howard Levy from Hopkins gave the opening plenary talk and made these comments, and I think with mentioning that even though fatigue was this common, it wasn't quite clear why people with Ehlers Danlow syndrome, why fatigue was such a problem for them. And I thought what was pretty obvious to me, having worked with similar patient groups, that their sleep was awful and chronic pain, their most common symptom, is a common cause of fatigue. 

06:08
Dr. Alana Pocinki
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. 

06:25
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 sleep besides those? 

06:40
Dr. Alana Pocinki
Well, depression is the other piece. I often talk about the sort of vicious cycle of chronic pain, poor sleep, depression and fatigue because each one of those aggravates the others. And again, in our sort of 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 improvement of their sleep. And certainly pain specialists similarly, I've been surprised there are even pain specialists who say they're not comfortable prescribing antidepressants. And it's like, how can you be a pain specialist not prescribe antidepressants? Because in my patient population, these two things just go hand in hand. I do often reassure people that depression in this way 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 with what they're dealing with but that we know. 

07:37
Dr. Alana Pocinki
What I typically tell them is just chronic illness, chronic pain, depletes what I call your feel good neurotransmitters and you end up being depressed and irritable and trouble concentrating and lack of motivation and all those things we see as cardinal features of depression. Beyond that sort of vicious cycle and that sort of big three tributing to fatigue certainly there are a host of metabolic factors that can contribute to fatigue. Common ones I see are deficiencies in vitamin D, vitamin B, twelve, magnesium. I see a lot of patients specifically, 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. The big picture in hypermobile people simple tasks are tiring when they go for a walk. I often sort of 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 to do that simple task. 

08:41
Dr. Alana Pocinki
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 they lock their wrist. They lock their shoulder, they lock their shoulder blade, they lock their rib cage and they push. But if all those joints are unstable and I've seen patients coming into my own office they lean against the door with their shoulder because they can't open it otherwise. So very simple tasks are extra work and then other stresses and so on. But I guess the other piece, somewhat ironically, is autonomic dysfunction itself, which tends to be both a cause and an effect of fatigue in that the body's inability to maintain an even keel, exaggerated stress responses and then overcorrections and then recorrections. That sort of what I call 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. 

09:38
Dr. Alana Pocinki
Those simple things are tiring. And then, unfortunately, in a sort of unfortunate paradox, the more rundown and overtired you get, the worse your autonomic dysfunction tends to be. And then indirectly, I think autonomic dysfunction is a major player in poor sleep quality. So it's also a big factor in fatigue. 

09:56
Jennifer Milner
Well, so speaking about sleep, you've talked about how being sleepy is different from fatigue. So what role does sleep play in fatigue? And in this population, especially with having trouble getting what you said, it seemed like they were getting a good night's sleep. 

10:14
Dr. Alana Pocinki
I think it's a huge factor. It and pain are the two major things that perpetuate fatigue. And we know from their sleep studies they 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 seven 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 the whole concept of non restorative sleep, somebody who's sleepy can sleep and wake up and feel somewhat refreshed. But in these syndromes, people just it's incredibly frustrating that they wake up and feel like they haven't slept at all. 

11:03
Dr. Alana Pocinki
I like to use the sort of metaphor of I suggest to patients that they consider that their body has a fuel tank, it has an energy reserve, and that sleep is their major chance to put gas in the tank, and that so many other stresses that they deal with every day are depleting their energy. And so if sleep isn't restful and pain and household or school or other chores or other stresses, if they're lightheaded every time they stand up, the percentage of people their blood sugar is fluctuating, all these things are sort of draining their energy. And most of these people, when I say, look, here's what's putting gas in your tank, a decent night's sleep, here's all the things that are taking energy out, it's no wonder that every day you're kind of negative, and after years of being in this cycle, you're exhausted. 

11:52
Dr. Linda Bluestein
That's actually a great analogy, and I have a question about that too, when it comes to exercise, because I feel like with a lot of people who do not experience these conditions when they exercise and they move, that actually does help add some fuel to their tank. But maybe because of the joint instability and a variety of other factors, pain or what have you, that when people that have hypermobility disorders, some people, when they exercise and move, it may have the opposite effect, depending maybe on where they are metabolically or other do you see that? 

12:27
Dr. Alana Pocinki
Yeah, I think the big issue here, I guess the larger issue of what we talk about is sort of budgeting your energy and walking that tightrope of trying to do as much as you can every day without doing too much. And exercise is a good example where a lot of my overtired patients will say, well, I'm exhausted, I can't exercise. And so my usual response is, how about lying in bed? Okay, I can do that. I'm good at that. Okay, well, so lie in bed and move your arms and legs around for a few seconds a few times a day. But yeah, 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, and they don't realize that they're pushing too hard and they should be stopping to rest. 

13:22
Dr. Alana Pocinki
So exercise is critical, but not doing too much is just as critical. And a lot of people, I think, just have, when you say, oh, you need to exercise, they think you're telling them to go to the gym for an hour. They 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 sort of done carefully. 

13:54
Jennifer Milner
Well, and one of the things that you touched briefly on earlier, you talked briefly about depression and sort of being part of that vicious cycle. I know that you presented a webinar called Psychiatric Misdiagnoses and 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? 

14:19
Dr. Alana Pocinki
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. And unfortunately, if your body makes a surge of adrenaline because your blood sugars just crashed or because you're over tired 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 five criteria, you can say, well, yeah, I did have this, 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. So there are some people who have anxiety. Clearly they are worried about their health. They often have family stresses, financial stresses, school. 

15:19
Dr. Alana Pocinki
There's sort of a situational or appropriate level of anxiety, but in particular mistaking these acute episodes of anxiety for panic or anxiety. And some patients will come right out and say, I get these panic attacks, but I'm really not anxious, I'm not upset, I'm not really anxious. And unfortunately, the English language doesn't have a great other word for this. I tend to call it jitteriness and say, do you feel jittery? But 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. 

15:57
Jennifer Milner
So if I'm understanding you correctly, you're saying the basis of the paper you were talking about maybe looking at it from a disautonomic point of view rather than from anxiety point of view. 

16:09
Dr. Alana Pocinki
Correct. 

16:09
Jennifer Milner
Is that correct? 

16:10
Dr. Alana Pocinki
Okay, right. And even I think the very first time I gave this talk, some parents came up to me afterwards and said things like, gee, 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 and he didn't have anxiety or Add anymore. 

16:33
Jennifer Milner
That's really interesting. Sorry, I'm sitting here and I'm processing that because as much as we talk about it, all the comorbidities kind of going together, it's really interesting to think about just switching. The way that you approach it slightly may have a huge impact on how your day to day life right. 

16:52
Dr. Alana Pocinki
And unfortunately I don't know, I guess conversely isn't the right word, but some of these patients are even diagnosed as bipolar, and it's really hard to get that out of their medical records. There are other unfortunate implications to these misdiagnoses. 

17:09
Jennifer Milner
Well, so 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? 

17:18
Dr. Alana Pocinki
Well, I guess the whole collection of mast cell dysfunction and the symptoms that go along with that we commonly see 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 that I can think of. Yeah. May think of something else later. 

17:48
Jennifer Milner
No, that's okay. I 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 right. 

18:00
Dr. Alana Pocinki
That sounds person. 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. 

18:11
Jennifer Milner
I love that. Can you say that one more time? 

18:13
Dr. Linda Bluestein
I was going to ask you to say that again because. 

18:18
Dr. Alana Pocinki
What I often explain to patients is the challenge to me 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. 

18:34
Dr. Linda Bluestein
Oh, I like that. That's really good. 

18:39
Dr. Alana Pocinki
Which unfortunately is why a lot of physicians, we can't attract other physicians to this field because. 

18:46
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 I feel like awareness is improving, but obviously we have a. 

19:11
Dr. Alana Pocinki
Long ways to go, right? Yeah, that's obviously the hope is that physicians will recognize somebody like this in their practice and then say, oh gee, I think maybe I have two or three other people have something like this I need to learn more about. This doesn't happen as often as we'd like. Sure. 

19:30
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 sort of finding the support for her daughter and digging through it, has gone back through her records and is calling all of these patients of hers back into her practice and going, I've learned some things. Let's talk about this. So the more information is out there. 

19:53
Dr. Alana Pocinki
I remember one of the first patients I saw with dysautonomia and the first patient I saw with mast cell disorders in 1991, and one of these people actually moved away for 15 years and then came back and when she came back said, do you remember me? I said, not only do you remember you, but now I can explain to you why your blood pressure would go from 110 over 70 to 170 over 110. 

20:21
Dr. Linda Bluestein
Yeah, 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. And so hopefully care will continue to improve as we are learning more and more. 

20:40
Dr. Alana Pocinki
I guess a postscript to your question about sort of how I came to be an expert in this is I learned from my patients. I only gradually realized that, gee, most of my migraine patients are hypermobile. Most people with varicose veins are hypermobile. Most people. And some people would come in with, why do I bruise so easily? And I said, well, do you have this? Do you have this, do you have that? And they're like, yeah, how do you know all those things? I said, well, because medicine is about pattern recognition. In fact, when I went to the first few ehlers downloads groups that I went to, I sort of jokingly mentioned to some of the genesis. I'm a general internist. I don't have a sign over on my door that says, if you can put your foot behind your head that you should come and see me. 

21:24
Dr. Alana Pocinki
These are just my general medical practice who come in with symptoms that end up being related to joint and tissue laxity. 

21:31
Dr. Linda Bluestein
That makes sense. I want to circle back to what you were saying earlier about bipolar disorder and potentially some people being misdiagnosed, because I know that there were some studies done a number of years ago that did look at the overlap between bipolar and hypermobility disorders ailers, Danlos, et cetera. So that's actually a really interesting thought, is, does somebody present as if they might have bipolar, but actually the underlying cause of some of those symptoms is the Dysautonomia or some other do you elaborate on that a little bit more? 

22:06
Dr. Alana Pocinki
That's an important well, right. Similarly, there are studies showing an increased incidence of anxiety in the hypermopoly population. And my question is, then, have these people been evaluated for autonomic dysfunction? Just because they satisfied the DSM criteria for anxiety doesn't really mean they have psychiatric problems, just the way these conditions are defined. Symptomatically, certainly. Yeah. I have seen people who similarly will present with typical symptoms of mania. Gee, for the last two nights, I hardly slept at all, and I got so much done, and I was up all night cleaning the house and doing the laundry and whatever, and you say, okay, gee, that sounds like you were manic. It's like no, actually, I was exhausted. I was running on adrenaline. Yeah. It's tricky, I know. I've just seen some people who said, oh, yeah, ten years ago they diagnosed me with bipolar, and it's obvious I don't have that. 

23:04
Dr. Alana Pocinki
And finally, people are willing to believe that I don't have that. Once I got my pain treated appropriately or started getting more restful sleep, then I stopped having these so called manic episodes. Now, there are some patients I see who have both, and that's very difficult to sometimes tease out. There was one woman who I struggled trying to get her 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 about that? She said, well, haven't I told you that my brother and my dad were both bipolar? No, you never told me that. I should have asked, I guess, but that was kind of the exception that proves a rule, and most of the time but I would imagine there's overlap. 

23:55
Dr. Alana Pocinki
But I think that based on the symptomatology, some of the dystrophia symptoms could easily be mistaken for psychiatric symptoms. 

24:03
Dr. Linda Bluestein
Absolutely. And it's interesting to me too, because one of the most anxiety provoking things is going into a doctor and being either told directly or somebody implying that you're crazy or lazy or whatever, whereas. 

24:20
Dr. Alana Pocinki
We have all these symptoms, so you must be making them up. 

24:22
Dr. Linda Bluestein
Right. And it's very disarming of the anxiety when somebody believes you and they say, I have a plan, and I think I know why you feel this way. So I also feel like anxiety, you can get anxious about being anxious, and it can work the other way as well. 

24:39
Dr. Alana Pocinki
Right, certainly. And the analogous sleep situation is what I call anticipatory insomnia. If you don't sleep well, you worry about not sleeping well, and that just makes it worse, right? 

24:50
Dr. Linda Bluestein
Yeah, definitely. So we know that in 2017, the International Consortium reclassified the ailers Danlos syndromes, right. And came up with stricter criteria for hypermobile Eds and also came up with the new classification of hypermobility spectrum disorders. And we know that they also, in coming up with this criteria, kind of left out the core mobilities, et cetera. But I would love to hear in your practice, in your experience, do you see any difference in terms of the symptom of fatigue in people that would be more likely to meet the criteria for hypermobile Eds versus people that are more likely to meet the criteria for hypermobility spectrum disorder? 

25:34
Dr. Alana Pocinki
No, I really don't. I mean, this is when I get to sort of fall back on saying, I'm a clinician, so it doesn't matter to me whether somebody's a couple of inches 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. If you want to call it generalized hypermobility spectrum disorder or you want to call it hypermobile Eds, I tend to tell people, 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 virtually now, there is a lot of information about their Danlos. And just don't sweat the fact that essentially I say that these new criteria were designed as entry criteria for research protocols. 

26:26
Dr. Alana Pocinki
As long as you're not trying to get into a research study, nobody's going to matter. And even for things like disability or FMLA forms for employers or something like that, eller Stanlos is something somebody who doesn't know something about it could look up and say, oh, gee, okay, I get it. They see HSD on a form and they go to somebody know. So I don't find the distinction clinically. You know, some of us are kind of hoping that the criteria will be revised. I mean, when they were first created, the idea this was going to be a working document and that as time went on, if we saw that it was excluding a lot of people or that we might revise them, I don't know what the status of that is. Right. They certainly seem to have just as many as the Comorbidities, and certainly they're not any less ill than I have. 

27:22
Dr. Alana Pocinki
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. 

27:30
Dr. Linda Bluestein
Right. And a lot of people, I think they learn about Ehlers Danlow syndromes and then if they go in for an appointment and somebody actually does take a look and assesses them and says, no, you don't meet the criteria even for the hypermobile type, and we don't suspect another type. And I think in some cases they do feel like they are going to miss out then on maybe some coverage for some insurance things and or being taken seriously by their other providers. And I think in some cases it can affect how seriously the family even takes you. I mean, we keep getting told over and over again that it's not a lesser diagnosis, but perception is everything. 

28:10
Dr. Alana Pocinki
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. Get into arguments with your specialists and orthopedists, or Rheumatologists who see my patients say, you're not hypermobile at all. Well, yeah, actually they are. A Rheumatologist recently tell one of my patients that it was impossible to sublux your hip. She'd never seen anybody with a sublux hip. And I was like, I'd probably see somebody every day with a sublux hip. Still some professional education we need to do for sure. 

28:52
Dr. Linda Bluestein
Definitely. And in terms of treatments for fatigue, you've mentioned one of them which is getting better sleep. For sure. But of course, there's 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? 

29:10
Dr. Alana Pocinki
Well, as we talked about, there are certainly numerous causes, and so identifying, going through very thorough evaluation, identify which causes are most prevalent, most relevant in a particular patient, sort of is going to guide your treatment approach. I think. Again, going back to the big ones, a lot of patients I see come in not on any kind of pain medication, and there's this syndrome or phenomenon that I refer to as background pain, where you're in chronic pain for a long time, you sort of no longer are consciously aware of it. And a lot of people don't realize how much pain they're in with all the cue and cry about the opioid cris. I see lots of people whose pain is under treated. I mean, you get their pain under control, their sleep improves, their mood improves, their fatigue improves. Sometimes even the patients are reluctant to take the medication that they need. 

30:11
Dr. Alana Pocinki
And I'll have to bargain with them and say, well, here's a prescription for five or six 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. Yeah. Again, different issues for. Different people, but focusing on pain and sleep and mood and the idea 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. But as you said, the first thing I do when seeing a new patient is sort of go over with them how the pieces all fit together and reassure them that they're not imagining this stuff. 

31:03
Dr. Alana Pocinki
And there's a reason why you have this symptom, there's a reason this happens when you do this, and that there is a treatment program we can set up that hopefully will relieve some of your symptoms. 

31:15
Dr. Linda Bluestein
And I would love to on the topic of treatment, I would love to also circle back to hormones, because you had mentioned about testosterone. How do you approach that in terms of working up people and or treating? 

31:27
Dr. Alana Pocinki
Well, this is something I happened to notice probably seven or eight years ago now, that a half dozen college aged women who 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, five days a week. 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. And so I measured these women's testosterone levels, and lo and behold, they were extremely low. Then I had no luck at all in 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. 

32:29
Dr. Alana Pocinki
I mean, there isn't even 60,000 ICD Ten 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. But if a normal level is the NIH norms are 15 to 75, and you're a healthy 19 year old with a level of six, 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. So again, 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 especially estrogen and testosterone as it sees fit. So with a number of safety merchants there, I actually just saw somebody yesterday who just looks so much better. 

33:30
Dr. Alana Pocinki
I made the analogy, she probably 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 is just so much better than when I saw you three months ago. It was just dramatic and the same thing. I had one young woman, we started on this when she came back three months later. I was worried I'd given her too much. It's like all of a sudden she built a lot of muscle in a short period of time. So it's just 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, you know, it's not Opioids. Opioids could suppress testosterone. These were not people who were taking opioids. 

34:21
Dr. Alana Pocinki
So I think there's something going on. There clearly something I've mentioned in a couple of recent talks has been apparent dysfunction in the HPA axis and cortisol secretion. And they see people who my best speculation about this is that just the way in the Dysautonomia is the central feature is an exaggerated stress response, exaggerated sympathetic adrenaline stress response. That Cortisol is really your body's other major stress hormone. And if you're making too much adrenaline response isn't going to keep stress, you're probably making an excessive Cortisol surge too. And because these surges, like the bump in adrenaline levels, are probably transient, the ODS of having a blood test and catching one of these are pretty slim. I've had a few people where we've done blood tests half a dozen times and not only seen normal levels, but often seen low cortisol levels. And I've had to say, look, you're 275 pounds. 

35:23
Dr. Alana Pocinki
You clearly don't have a Terrial insufficiency. You look like you have too much cortisol, not too little. And finally, on the fifth 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 again, these are syndromes. I've tried to sort of explain to various endocrinologists that, do you have any thoughts about what's going on? And this just doesn't compute. It doesn't fit in any paradigm that they've encountered before. But clinically sort of makes sense to. 

36:00
Jennifer Milner
Me, especially looking at it with Dysautinomia and how it all ties together that way. So if there's any researchers out there listening, here's a good one for. 

36:16
Dr. Alana Pocinki
You know, if only somebody like Bill Gates had a family member with, say, Addison's disease and we could know, these patients could finger stick their cortisol levels. Both the ones who are truly adrenal insufficient and are trying to manage their cortisol replacement just by guessing, but also some of these people who clearly, I think, have fluctuating Cortisol levels, that would be really helpful. But I don't know. Yeah, I did. Years ago. I remember talking to one of the top mass cell docs about how difficult it was to find abnormal blood tests. You really would increase your yield by running off to the lab whenever you wake up covered in hives, quickly run off to the lab 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? 

37:11
Dr. Alana Pocinki
And his response was, no comment. So that's another just, I think, linda, you remember the PT at last week's Eds conference? It was asking know, the patient looks like she has mast cell problems and adding Chromalin 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. Right. People have elevated mass cell markers are relatively uncommon, and it's analogous situation to the HSD situation where I say, man, clinically, this is obviously what you have. If you take Chromalin and a bunch of your symptoms improve, this is obviously a mass cell problem. And even if all your so called tests for mass cell come up negative, that doesn't really change what you have. 

38:03
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 that and how the blood tests are something she tries not to have as the gold standard for her because it's so difficult to find what you're looking for sometimes in the blood work. And as you said, it could be eight different results if you do eight different tests in one day. 

38:31
Dr. Alana Pocinki
Right. While it was nice, the paper about the hyperalphal 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 mass cell problems. Trying to explain to people, no, we actually would expect your tryptase levels to be normal in the vast majority of cases if you have mass cell problems. 

38:56
Jennifer Milner
So this is clearly an area that needs a lot of research. Is there any other area that you would like to see research with fatigue and hypermobility? Is there anything else you're hoping will happen? 

39:07
Dr. Alana Pocinki
Well, I think the biggest thing I've hoped for years is that somebody will try to figure out how to fix what's wrong with their sleep. The pattern is pretty consistent. They have little or no deep sleep and they have frequent so called spontaneous arousals. And 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 really should be asleep? I don't know at what level 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. 

40:03
Dr. Alana Pocinki
This is something you can measure in the sleep lab. So that's really the biggest thing because I think there's a huge number of people I literally saw one this week. He chronically tired. He's a guy in his mid 50s. He's an attorney who's having cognitive issues. And I just tried to explain to him, I said, you're exhausted. This is all fatigue. You're trouble with following complicated stuff and 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 restalite sleep in decades. So he finally went and had a sleep study, had mild sleep apnea. I think he had an ahi of nine or ten normals up to five. Five to 15 is mild. So he went back and was fitted with a CPAP mask and pressure was adjusted till he had no apnea. 

40:59
Dr. Alana Pocinki
But as soon as they put on the mask and valid up and his apnea went away, he still had 84 arousals and 13 awakenings in less than 5 hours of sleep. 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 that read his sleep study, who said his apnea is well controlled and didn't comment on fact, spent 0.2% of his night in deep sleep, yet essentially no deep sleep, even after apnea was completely limited, eliminated. And so again, that's a professional education issue, that somebody needs to recognize this pattern. And again, this is something I've described for probably close to 20 years now, and nobody I explain it to sleep doctors and they still just don't get it. I've had to find one place where research would really help, because people are working on the autonomics and some of the others do this. 

42:09
Dr. Alana Pocinki
But people go top sleep labs in the country, and one of them very sadly, went to probably the top sleep lab in the country. And they were and was told, you just have chronic insomnia and there's nothing really you can do about it. It's like, what's the worst thing you could tell somebody with a chronic illness is nothing you can do for them? That's where I would I had some money research, kind of hoping that some of the long COVID money might go into that, but haven't seen any of that yet. 

42:42
Jennifer Milner
Well, I'm hopeful because I've learned a lot just from our conversation here. 

42:50
Dr. Linda Bluestein
The. 

42:50
Jennifer Milner
Changes that I've seen with hypermobility and how visible it is, at least in the dance world and sort of in the dance medicine circles I'm in. It's encouraging to me. I think it's leapt forward so much. And so ten years from now, we'll look back on this podcast and we'll be like, ha, remember when we didn't even have a sleep study on this? Be like, yeah, that was the Dark Ages, because we will have done so much. 

43:18
Dr. Alana Pocinki
Yeah, the internet is a great thing. That when I wrote up 2010, I wrote a little paper for my patients to share with their families about what their different symptoms were like and how they all fit together. And I wouldn't have dreamed for a minute that paper would still be flying around the Internet ten years later, and the number of people have found that helpful and found, oh, gee, man, how does this guy know all this about me? I've never met him. So the Internet has been great, and I think the only downside of that, I think our major progress in the last decade clearly has been in public awareness, patient education, 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 often say to patients, it's 2022 now and we have essentially one new pain medicine, one new antidepressant, and one new sleeping pill this decade or this century, really. 

44:18
Dr. Alana Pocinki
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. It's like these are insomnia and depression and pain. These are major issues that millions and millions of people suffer with and nothing new to offer them. So not to end on a down. 

44:39
Dr. Linda Bluestein
Note, 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, like you said, some more obscure thing, and if we could get more people to be able to work and be productive members of society, and then they get the meaning out of being able to work and contribute and all of that, man, that would be just such a huge thing for society at large. 

45:07
Dr. Alana Pocinki
Yeah. I'm interested in pharmacogenetics and the idea that different people metabolize drugs differently. And if you're a poor two d six metabolizer or intermediate, which is pretty common, almost half the population is, that eliminates half the opioids oxycodone, hydrocodone aren't going to be effective for you. And then you're left with fentanyl opanamorphine. You only have a few options, and then if you get a rash from this one and this one causes this, then suddenly you have almost nothing left. It's just very frustrating. 

45:40
Jennifer Milner
Well, you have given us a lot to think about today and I really appreciate your sharing your expertise on this. Is there anything that we didn't touch on that you wanted to cover? 

45:51
Dr. Alana Pocinki
No, I don't think so I'll probably think of something later tonight. This kind of thing is great. I mean, I'm happy spending an hour of my time knowing just how many people will get some benefit out of this. And there's such a small number of people that I can actually see in the office and sort of help one one. But a lot of people, fortunately, are able to take some ideas to this 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? 

46:20
Jennifer Milner
That is our hope. 

46:21
Dr. Alana Pocinki
Yeah. Thank you guys for all your this takes a lot of effort on your part too, obviously. 

46:26
Jennifer Milner
Well, we are grateful for your time and hope that it reaches our listeners, as you said, and can do some help. You have been listening to Bendy Bodies with the Hypermobility MD, and today we have been speaking with Dr. Alan Pasinki. Dr. Pasinki, thank you so much for sharing your expertise with us today. 

46:43
Dr. Alana Pocinki
Thank you. My pleasure. 

46:44
Dr. Linda Bluestein
Thank you so much. 

46:45
Dr. Alana Pocinki
Bye bye. 

46:48
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. If you want to follow us on Instagram, it's at bendy underscore bodies and our website is WW bendibodies.org. If you want to follow Bendy Bodies founder and co host Dr. Bluestein on Instagram, it's at hypermobilitymd all one word, and her website is WW dot hypermobilitymd.com. If you want to follow cohost Jennifer Milner on Instagram, it's at jenniferperiodmillner Milner and her website is WW dot. Jennifermilner.com, thank you for helping us spread the word about hypermobility and associated conditions. We want to hear from you. 

47:52
Dr. Linda Bluestein
Please email us at info@bendybodies.org to share feedback. The thoughts and opinions expressed on this podcast are solely of the cohost 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 vice, 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.