Codifying Upper Cervical Instability with Leslie Russek, DPT, PhD

[00:11] Jennifer Milner: We don't want either the clinicians or the patients to panic and go, "Oh my God, I've got a brain tumor." But we want them to step back and say, okay, do I need to take some special steps with this person? And we identified some red flags based on the symptoms in the history, and that would indicate that I need to be careful with my physical exam. So if this is somebody who's having seizures, I'm not having them move their head around. I'm not pushing on their neck.
[00:42] And then we also identified red flags in the physical exam. So if I do a test and I get a certain result, then that might indicate, okay, there are some structures that are being stressed that make this a more urgent situation than another patient who may be having, let's say, pain and headaches but not neurological involvement.

[01:13] Dr. Linda Bluestein: Welcome back to the Bendy Bodies Podcast, bringing you state-of-the-art information to help you improve your well-being, enhance your performance, and optimize career longevity. This is the Hypermobility MD, Linda Bluestein, and unfortunately co-host Jennifer Milner is unable to join us today. I started Bendy Bodies to provide accessible information about joint hypermobility. Combining my medical education and personal experiences enables me to treat and coach patients and clients to optimize their quality of life. This information is for educational purposes only and is not a substitute for medical advice.
[01:50] Our guest today is Dr. Leslie Russek, DPT, PhD, Professor Emeritus at Clarkson University, and practicing orthopedic physical therapist specializing in hypermobility syndrome, fibromyalgia, headache, and chronic pain. Hello, Dr. Russek, and welcome to Bendy Bodies.

[02:07] Leslie Russek, DPT, PhD: Thank you for inviting me.

[02:09] Dr. Linda Bluestein: I should say welcome back to Bendy Bodies. We're so excited to chat with you today. We spoke with you in episode 52, and at that time you described your background and experience and gave us some fabulous recommendations about managing jaw pain, something that we see so incredibly frequently with people who have symptomatic generalized joint hypermobility. I'll definitely refer the listener back to that episode to learn more about you and your background.
[02:36] But today we are going to cover upper cervical instability, or UCI, a frequently misunderstood and crucially important topic for people with generalized joint hypermobility. Dr. Russek, you and an international team of physical and physiotherapy clinicians and a symptomatic generalized joint hypermobility expert rheumatologist recently published expert consensus recommendations for screening, assessing, and managing patients with UCI associated with symptomatic generalized joint hypermobility. This article will be linked in the show notes and is titled "Presentation and Physical Therapy Management of Upper Cervical Instability in Patients with Symptomatic Generalized Joint Hypermobility: International Expert Consensus Recommendations." So we are thrilled to chat with you. Can you start out by telling us what is UCI and why is this so incredibly important for people with symptomatic generalized joint hypermobility?

[03:24] Leslie Russek, DPT, PhD: So UCI is upper cervical instability, and it includes both craniocervical instability, CCI, and atlantoaxial instability, AAI. We debated about the terminology. Sometimes people will use CCI to relate to both of those joints, but technically it refers to craniocervical — the head on the first vertebra. But we wanted to talk about both of them, and so some literature now is starting to use the term UCI.
[03:56] It's really important for people with symptomatic joint hypermobility because we think it's really common. It contributes to things like headaches, jaw pain, and other problems when it's mild. And when it's severe, it can be really disabling. So it's common in the mild form, not so common in the severe form, but very disabling. It's a complicated type of patient, complicated presentation, difficult to diagnose, and we felt a lot of those people were getting missed, overlooked, maybe misdiagnosed and not ideally managed.

[04:34] Dr. Linda Bluestein: That makes sense. And how did this journal article and expert consensus recommendations come about?

[04:41] Leslie Russek, DPT, PhD: A couple of years ago, there were a group of doctors who wanted to develop a protocol for using cervical traction to treat cervical instability. I don't know how they got my name, but they invited me to join. And then I invited a couple more PTs, and the PTs were concerned that cervical traction certainly can decrease symptoms, but it might not be a good treatment overall. And then we realized we have no idea what good treatments are. There's nothing in the literature for this population, but there are a lot of people who know a lot.
[05:15] In the United States in particular, those people are really spread out and we haven't had a way of communicating. In Europe — London — there's a cluster of clinicians and researchers that work together on hypermobility. There's another cluster in Denmark and Belgium, Australia. But in the US, we really don't have any physical therapy-based research labs, academic programs, or any way for the expert clinicians to communicate.
[05:42] So I started getting a team together, and we were talking about what we would do for UCI. And I realized that if we were going to be talking, we needed to share this information. So I reached out to Alan Hakim, rheumatologist and the director of education at the Ehlers-Danlos Society, and Jane Simmons, who coordinates physical therapy activities and research in London, and asked if they thought this was publishable. They were really excited about it.
[06:08] The timing worked out really well in that the Frontiers in Medicine Journal was putting together a special topics issue on Ehlers-Danlos, and they invited me to submit something. So the timing was good to submit this for that particular issue. And it's not research — it's a consensus. It's a group of experts, researchers, and clinicians talking together, but it's the best knowledge that we have to date, and it's a starting point. We should be sharing the best available knowledge until we have research that's better.

[06:44] Dr. Linda Bluestein: I'm so glad you explained that. I feel like that's so true in clinical practice because we don't have literature and research to tell us how to handle so many things, and so we have to learn from each other. This is just an incredible thing that you all put together. I want you to explain, if you would, the difference between highly suggestive and common symptoms.

[07:08] Leslie Russek, DPT, PhD: Sure. When we as clinicians, as physical therapists, learn diagnostic tests, we learn that some are what we call sensitive — that is, if you have the condition, the test will definitely be positive. And some are specific, which means that if the test is positive, you almost certainly have the condition. These are variables that are known for many tests that we use as physical therapists. But we don't know this for any of the tests that we use for upper cervical instability.
[07:38] Clinicians have an intuition about this, and as I was talking with this team of experts, some people would say, well, they always have occipital headaches. But occipital headaches can happen for a lot of reasons, so it doesn't prove they have upper cervical instability. Whereas if they have tingling in their face, that's less common — fewer people with upper cervical instability will have that — but it is very suggestive, and it helps us make the diagnosis.
[08:05] This is important because some of the signs and symptoms can be present in many different conditions. Some of them could indicate POTS. Some of them could indicate a jaw problem. So we don't want people to be misled into thinking that if they have jaw pain, they have cervical instability. But we do want people to know that if they're having pseudoseizures, or blacking out and it's not POTS, that suggests upper cervical instability. We don't have the research to prove that these tests are sensitive or specific, but intuitively we agreed that certain findings tended to be more common or more diagnostic.

[08:38] Dr. Linda Bluestein: That makes a lot of sense. And I also really like the way you broke things down into musculoskeletal UCI versus neurological UCI. Could you explain about that?

[08:55] Leslie Russek, DPT, PhD: Sure. We all know that there are different types of presentation with UCI, and we debated as a group different ways to classify it — would it be mild, moderate, or severe? But we finally felt that the most useful distinction was musculoskeletal versus neurological. This is because the musculoskeletal type tends to respond well to conservative treatment like physical therapy. Musculoskeletal means that the symptoms are due to muscles and joints causing pain. Things like headache, jaw pain, and maybe feeling like you have a lump in your throat are things that we see commonly in this musculoskeletal pattern.
[09:37] And then there was a group of patients that had a very different presentation with more neurological signs and symptoms, suggesting that neurological structures were being affected. So seizure-like activities, drop attacks, or feeling unstable — we call it boat rocking instability — which suggests that the brainstem is being compressed. Some of these neurological symptoms are from compression of the brainstem, some might be compression of cranial nerves at the base of the brain, and some might be compression of the blood vessels that bring blood to the brain or drain blood out of the brain. These patients have more neurological signs, and they tended to be more challenging to treat.

[10:32] Dr. Linda Bluestein: It was interesting because I posted on social media that I was going to be interviewing you, and I got a lot of questions this time — a lot of things that people wanted to know. And one of the things that someone asked was why in this paper you limited the conversation to upper cervical instability and did not include lower cervical instability, because they were commenting that they thought that was also common.

[10:59] Leslie Russek, DPT, PhD: It is also common. The reason we did that was so that it wouldn't be overwhelming. Lower cervical instability tends to either cause pain into the arms or musculoskeletal pain, and some of the same principles will hold for musculoskeletal upper cervical instability. It can also compress the spinal cord in the lower cervical spine, and so patients may present with some of the same neurological problems like the boat rocking instability or feeling wobbly on their legs for reasons other than just hypermobility.
[11:40] But we felt that upper cervical instability was already an overwhelming topic to try to simplify, and it took us a really long time to simplify it. We felt that was an important starting point. So lower cervical instability is really important as well — maybe a next step for us to take in the future.

[12:02] Dr. Linda Bluestein: And I thought it was really good that you also pointed out about confirmation bias and how important it is when you're asking these questions to ask them in the right way. I know I've experienced that when I briefly visited a Facebook group that was specifically on this topic. I started thinking, oh, the base of my skull hurts, and I started to feel more insecure about what I was experiencing — oh, maybe this is something more serious. Can you talk about that a little bit? I think that was a very important point that you all made.

[12:44] Leslie Russek, DPT, PhD: Yeah, it's a really delicate balance. We don't want to encourage patients — any type of patient — to overreact, because not everything is a crisis. If we list out symptoms, for example, it encourages people to agree with them. It's like, "Oh yeah, I feel that and I feel that and I feel that." So sometimes it's better to, as a clinician, just step back and let the patient tell their story and tell what's important to them, so that it is not being biased by what I think might be going on.
[13:20] It is a really delicate balance, because sometimes patients don't know what to share. A lump in the throat, for example — a patient coming in for headaches, why would they think that trouble swallowing their medicine is related? And so sometimes we do need to draw that out from them, but it's a delicate balance between drawing things out and letting them tell their story on their own.

[13:48] Dr. Linda Bluestein: And I also thought it was really excellent how you talked about the different levels of irritability. Could you talk about that a little bit and explain how that information should be incorporated into clinical practice?

[14:05] Leslie Russek, DPT, PhD: Yeah, we felt that was really important. It came up over and over again that people would say, "I wouldn't do that test, that would flare people up too badly," or "I wouldn't do that treatment, that would make people worse." And that's when we realized we really had to have tiers.
[14:22] I'm really proud of this aspect of our model — we use the patient's subjective information and history to get a preliminary sense of irritability, and we use that information to choose which physical exam tests to do. As a physical therapist, I learned that these are the tests you would do for instability — neck range of motion on everybody, for example. But it turns out that if somebody's really irritable, neck range of motion can completely flare them up. And so we have to have different criteria for identifying what tests are even safe to do.
[14:58] So we spent a lot of time figuring out what criteria tell us whether a condition is very irritable, and then using the subjective history — their symptoms — to decide what tests are safe to use. You can look at posture on everybody, but you might not want to have everybody moving their head around, because if their condition is really irritable, it could make them much worse, and that could last for weeks.
This is a little bit different than I might approach an unstable shoulder. With an unstable shoulder, there are provocation tests — you do something and the patient says, "Ow, that recreates my pain," and you understand what's causing it. The shoulder typically will hurt for a few minutes and then go back to how it was before. The neck is more sensitive, especially the neurological structures. If you flare them up, they could stay flared up for weeks.

[15:58] Dr. Linda Bluestein: And you also talked about yellow and red flags. Can you share how we should use that type of information, both in the history and in the physical exam?

[16:13] Leslie Russek, DPT, PhD: Yeah. The yellow and red flags are one of those things where we wanted the model to be as simple as possible, so we took everything out, but then people said, "Well, but you have to have yellow and red flags," and so we put them back in.
[16:23] Yellow flags refer to psychosocial factors that may influence a person's condition — things like anxiety, depression, psychiatric issues, financial issues, stress, whether they have support at home. We know from research that these yellow flags can indicate a poorer response to treatment if they're not addressed. Unfortunately, with this population, because they often have these psychosocial issues, sometimes their physical complaints are brushed off as, "Oh, you're just too stressed — that's why you're fatigued or dizzy and lightheaded."
[17:09] We felt it was really important to say: yes, these people do sometimes have psychosocial factors that can aggravate their condition, and these factors need to be addressed, but they are separate from what's physically going on. They compound — they add to. Some patients, if they have a really sensitive nervous system because they're highly stressed, treatment is not going to work very well until you calm that nervous system down. And so they may need to have these psychosocial factors addressed before they're able to respond to or tolerate physical therapy.
[17:49] The red flags refer to cautions — things that we might worry about. They might be other diagnoses, like a stroke. Obviously if somebody comes in with facial paralysis and they've had a stroke, that person needs to get to a hospital right away. There are certain conditions that are very urgent. Also, if it's cervical instability but it's really severe, then that's a red flag. If the person is having pseudoseizures — things that look like epileptic seizures but aren't true epileptic seizures, they don't have the same brain pattern — then that indicates that the nervous system is being stressed really severely. It may well be the upper cervical instability — it's not a different condition — but it indicates that this is severe and we need to address it.
[18:43] The red flags are signs that might — not always, but might — indicate that this patient needs special care. For therapists who are not familiar with hypermobility or upper cervical instability, they may say this is more than they're ready to deal with. Somebody who's having seizures when they turn their head is more involved than my knowledge base — I need to send them to a physical therapist who specializes in this. Or, if you are knowledgeable, you may say this person needs to see a neurologist or a neurosurgeon. I can still do some treatment to teach them how to take care of themselves and protect themselves, but they've got something going on that needs to be seen by another provider. So those red flags are alerts that you may need to get additional expertise with this patient.
[19:39] One important thing about the red flags is that it's always an "it depends." We debated these red flags over and over again. Somebody passing out — well, that's not a good thing. But then one of the participants in our group said, "Well, I deal with aerial gymnasts, and if they go upside down and they're hanging upside down and they pass out, that's not such an unusual thing." So everything always depends. If a person is just passing out, it's probably a bad thing, but there might be an explanation for it.
[20:10] So we don't want either the clinicians or the patients to panic and go, "Oh my God, I've got a brain tumor." But we want them to step back and say, okay, do I need to take some special steps with this person? We identified some red flags based on the symptoms in the history, and that would indicate that I need to be careful with my physical exam. So if this is somebody who's having seizures, I'm not having them move their head around, I'm not pushing on their neck. And then we also identified red flags in the physical exam — if I do a test and I get a certain result, that might indicate that some structures are being stressed in a way that makes this a more urgent situation than another patient who may be having, let's say, pain and headaches but not neurological involvement.

[21:00] Dr. Linda Bluestein: And I feel like because of all of those nuances, it makes it even harder for the person who might be struggling with this to find a neurologist or a physical therapist who will really take the time to listen. More so the neurologist than the physical therapist — the physical therapist will probably take a pretty detailed history. The neurologist, I feel like, especially with what often are young females, it's so common for people to have their symptoms disregarded and dismissed. Do you have any suggestions for someone who's having difficulty finding the care that they need?

[21:45] Leslie Russek, DPT, PhD: Yeah, that is a really challenging problem. And it's even worse because if the neurologist does anything, they're going to do an MRI and a CT scan, but those are going to be done lying down with the head perfectly in neutral, and everything's going to look fine. Instability is what happens when you're upright and you can't control the motion.
[22:04] And that's an important distinction: being hypermobile is different from being unstable. Hypermobility means you have too much motion — if I can turn my head 110 degrees each way, that's too much motion. But it's only unstable if the muscles are unable to control the motion, if the muscles are allowing things to wobble around. You can't see instability on an MRI, especially if the patient is lying down with the head supported.
[22:36] So sometimes the neurologist will do some of these imaging tests which are not appropriate, interpret the negative results, and say, "There's nothing wrong with your neck," and then go on to say, "You're just overreacting — you're a young female, you're just hysterical." Finding a good clinician is really, really challenging.
The Ehlers-Danlos Society does have a list of EDS-knowledgeable clinicians — physicians and physical therapists and occupational therapists. But there aren't nearly enough people on that list, and there are big deserts where there's no appropriate care. I don't think I have a neurologist or neurosurgeon knowledgeable about EDS within 500 miles. So what do I do with a patient that I think is unstable, and the local neurologists are doing the supine MRIs and saying, "Looks fine to me"?
[23:43] Some people will travel for care, especially if they have more severe involvement. And I think our model helps those people identify whether they fit into the highly irritable category, because you can have a lot of pain but it's not highly irritable — it's fairly constant, more controlled, and you are more likely to be able to manage it through exercise and body mechanics. But I think the article helps people figure out: which category am I in? Should I travel to see a specialist, or should I first spend 6 months working on exercise and body mechanics?
[24:19] I don't have a good answer to the lack of clinicians other than to access the Ehlers-Danlos Society list and to ask people who are knowledgeable. If you have a physical therapist who's knowledgeable about hypermobility, they probably know the local doctors that are knowledgeable, and you can build a network that way.

[25:45] Dr. Linda Bluestein: Absolutely. And I think it's just so fascinating — and I want to thank you for making this article also open access, because that means anybody can access it, not just people who are working at a teaching institution or something. And I think a lot of people don't realize that that's a newer evolution in scientific literature. It really is important because it does allow patients and their families to be able to read these things and try their best to interpret the irritability information and make some better, more informed choices about what they might do or where they might go.

[26:28] Leslie Russek, DPT, PhD: Right, and to share it with their clinicians. We've been hearing that patients are printing it out and bringing it to their doctor's appointments. And it's thanks to the Ehlers-Danlos Society and Dr. Hakim's facilitation that it is open access — they sponsored it to make it available. So with appreciation to them for doing that. We've been getting lots of positive feedback from patients. It has almost 23,000 views already, which is just mind-boggling. But it shows how hungry people are for knowledge.

[27:09] Dr. Linda Bluestein: And I've accessed this article multiple times online, and I have seen that count go up. Within 24 hours there was a huge number of views and shares, and it's just climbed so incredibly quickly, which definitely tells you that there's a lot of people who are interested in this information. And I do think most of it is patients who have been struggling to get the right imaging and things like that.
[27:31] Is there anything that you think people can do — let's say they're working with another type of physician who is open-minded but not super knowledgeable — in terms of more advanced imaging? Because it seems like different neurosurgeons prefer different kinds of imaging. Some are going to want an upright MRI, others are going to want rotational imaging. Any thoughts about that?

[28:04] Leslie Russek, DPT, PhD: We deliberately chose not to address the imaging issue. There are actually a couple of recent systematic reviews looking at imaging for upper cervical instability, so there are some publications on that that make recommendations. Of the neurosurgeons who specialize in cervical instability in hypermobile patients, there are differences. Some do want to see the upright MRI because they want to see how gravity loads both the musculoskeletal system and the neural system inside. Other clinicians prefer the supine because it can be more precise, but that's usually after they've already made a diagnosis and they're making decisions about surgery. So there are some good articles out there that talk about imaging, and we chose not to address that because we already had a lot on our plate with the conservative care.

[28:58] Dr. Linda Bluestein: That makes sense. And we can share those other articles in the show notes as well, which I think people would really appreciate.
Yes, and printing out articles and highlighting certain relevant sections — because everyone's busy — and approaching that with your clinician by saying, "I'm curious about this, this is something I think might apply to me," is really, really important. None of us like to feel like we don't know what we're doing. So I think it's really important to approach someone in a respectful way with this information, with these articles, and say, "I'm curious about this — would you be willing to take a look at it?"

[29:47] Leslie Russek, DPT, PhD: Yeah. And I find the best clinicians are often the ones who are open-minded, who are willing to say, "I know a lot about many things, but I don't know everything, and if there's something I don't already know about, I'm interested in learning." It's usually a good sign when a clinician says, "I don't know a lot about that, but I do want to learn more." It's usually a sign that they really do know a lot.

[30:11] Dr. Linda Bluestein: Mm-hmm.

[30:12] Leslie Russek, DPT, PhD: So that's a good sign. And I do have a patient summary based on the article that's available on my website, which focuses on what the patient feels and things that they can do to take care of themselves. So for people who are overwhelmed by the full academic article, there's a patient summary that's a little bit more in layperson's terminology.

[30:38] Dr. Linda Bluestein: Thank you so much for doing that. That's really amazing. And we can link that in the show notes as well, so people can easily access all of these things that we're referencing. So getting back to the article, what interventions do you recommend, and I know you broke those up into different categories based on irritability. Could you discuss that a little bit?

[31:03] Leslie Russek, DPT, PhD: Sure. Just like we use the basic irritability based on symptoms to decide what physical tests we felt were safe to do — after doing the physical tests, we reassess irritability and decide what interventions are safe to do. And we graded the interventions on three levels. One level we felt was safe for everybody, so could be implemented even with patients who have an extremely irritable condition. Another level was for people who had moderate instability, and then another set of interventions for people with milder instability.
[31:49] The clinicians and researchers who compiled the recommendations treat a wide range of patients. Some clinicians treat patients who are bedbound and may be going in for fusion surgery. But on the other extreme, some clinicians treat professional acrobats who are high-level athletic performers. So the treatment range is a huge spectrum, and what's appropriate for that acrobat might not be appropriate for the person who's in bed.
[32:24] The interventions for the most irritable person tend to avoid directly affecting the neck, because the neck is irritable. So we focus on things like lining up the whole body, having a stable foundation — the feet, the hips, the low back — as a stable foundation for the head and neck. Working on body awareness in the lumbar spine so that people have more stability there. Body mechanics, so that when they're doing simple things like brushing their teeth, they're not leaning their head forward but hip hinging and keeping the head stable. A lot of education — there are certain interventions that all patients would benefit from.
[33:22] The next level up is when we might start doing some direct intervention to the neck — some body awareness exercise or proprioception exercise. We know that people with hypermobility have poor proprioception or body awareness, and we think this is important in the neck because if you don't know where your head is, it's more likely to wobble around and you're not going to have good control over the movement. So you can start proprioception exercises at this second level and do some thoracic and upper back strengthening and a little bit of neck exercise.
[33:55] And then for people who have the mildest form of instability, they can do more aggressive exercise. Our experience shows that if a person has a higher level of ability and is responding to therapy, the irritability will decrease, and then they'll be able to do more. And if they continue to improve, the irritability will decrease some more. So people aren't stuck at a level of irritability — because remember, instability is the inability of the muscles and the nerves that control those muscles to maintain stability. Being hypermobile doesn't mean you're unstable. You can become stable through training the muscles and the nerves. And people will change from being highly irritable to moderate irritability to low irritability to being relatively symptom-free most of the time if they're responding well to therapy.

[34:59] Dr. Linda Bluestein: Definitely. And one thing I feel like in our current healthcare system, which is often so production-focused and getting more throughput — the differential diagnosis is something that often gets less thought. We evaluate somebody and we come up with what we think the working diagnosis is, and we don't really spend a lot of time thinking about the differential diagnosis. But you talked about that as well — conditions that should be considered in the differential diagnosis. Can you talk about that a little bit?

[35:32] Leslie Russek, DPT, PhD: Sure. Just because somebody looks like they have instability doesn't mean they do. And it doesn't mean that's the only thing that they have — they could have other conditions as well, and that can make it complicated.
[35:46] POTS, for example — many people with hypermobility have POTS. POTS can make you lightheaded. It can cause drop attacks where you just collapse on the ground. So you may have POTS in addition to cervical instability. But you may also have functional neurological disorder — that's when the nervous system is not functioning properly. There's the sensory version, which we call nociplastic pain, where the nociceptive or pain processing nerves are not communicating well and you have pain that's a processing error, which is different from pain due to tissue damage. People who are hypermobile often have both. And functional neurological disorder is the same concept, but on the motor side, where the motor nerves are not functioning properly and people may have abnormal movements from that.
[36:42] If we don't recognize these alternate or coexisting conditions, then we're not going to be providing the best intervention. So we always want to keep in the back of our mind: okay, it looks like somebody with cervical instability, but might it be something different, or might they also have something else going on? And especially if the patient's not responding well to therapy, we want to revisit those hypotheses and say, okay, what's going on?
[37:13] POTS is a good example: sometimes patients with POTS who don't respond to the usual POTS management, it's because they have cervical instability. So if you're managing their POTS and they're just not getting better the way they should, it's like, okay, is something else going on? Maybe they've got cervical instability that's aggravating their POTS, and maybe I need to treat the cervical instability for their POTS to get better. It's all very complicated, and there's a bit of trial and error — let me try this and see if they get better. If they do, great. If they don't, then I need to step back and reassess my hypotheses.

[37:56] Dr. Linda Bluestein: It is so complicated. And I feel like for so many people, including myself — you know, you could be on a certain trajectory, and I'm in physical therapy right now myself, and then I'll start getting better and then I'll do something, I'll fall or I'll move my shoulder in the wrong way, and all of a sudden things are worse. But it has nothing to do with the actual therapy that has been prescribed by the physical therapist — that aspect is going really well. With people with symptomatic generalized joint hypermobility, injury can happen so commonly with just everyday tasks, and it can be really difficult to sort out improvement over time.
[38:41] Do you have any kind of an app or anything like that that you use with your patients to help them track these kinds of things? Because I find even for myself, I go back for another appointment and I'm trying to remember what happened and how things were going. If it's a couple of weeks between appointments, it's hard to remember all of that.

[38:58] Leslie Russek, DPT, PhD: Yeah. There are some wellness apps, and there are some wellness journals that have a page per day and ask you to rate your symptoms each day. There are some pain management apps that are similar — they ask you to rate your primary symptoms and to track what might be causing changes. There's not one particular tracking app that I recommend to patients. Keeping a journal, though, can be helpful. You can get journals off Amazon that have a page per day with certain symptoms you can keep track of.
[39:35] And you bring up a really important point, which is when you're hypermobile, you're vulnerable to flares. As a physical therapist, I'm not going to make a hypermobile person never have pain again. But what I hope to do is give them a toolbox so that when they tweak their shoulder, they go, "Oh, yep, that's the shoulder thing, and I know what to do." I can rest it for a while, go back to my really basic exercises before I start moving it, maybe put a topical on or use a TENS machine.
[40:13] So having a toolbox — and I actually have a handout that I give my patients, especially when I'm discharging them — it's a flare management plan where they write things out, because people will forget. They'll say, "I flared up and my back hurts." And you ask, "Did you use your TENS machine?" And they say, "I completely forgot." So writing it down, putting it on your refrigerator, because when you have a flare you're not going to think clearly. You're not going to remember, "Oh yeah, I've got my TENS machine," or "That particular topical works for that particular pain," or even, "I've got those finger splints — where did I put my finger splints?"
[40:52] Having a toolbox, and really writing down what's in your toolbox, is so helpful. Some people will have a notebook: these are the things I do for my shoulder, these are my shoulder exercises when my shoulder flares up, this is what I do for my neck when my neck flares up.

[41:13] Dr. Linda Bluestein: Yeah, keeping a notebook can be really helpful. I had a very major surgery in 2011, and I was really glad I took a single piece of paper and was writing down things like "I did 5 minutes on the treadmill at half a mile an hour" and "the next day, 5 minutes at 0.7 miles an hour." It really was so helpful, because there were points where I thought I wasn't progressing. And I would look back at that piece of paper and go, "Oh my gosh, I totally forgot things had been that bad." So another point of keeping a journal is that it's really easy to forget how significant our symptoms were and how much progress we've made. That can be discouraging, but if we can look back and see that we actually have made progress, it can really help us keep going and stay compliant with our home exercise program.

[42:07] Leslie Russek, DPT, PhD: And to remind you that you've had flares before, and you've worked through flares before, and you'll work through this one too. It might take a few weeks or a few months, but yes, things can get better. And if you do the right things, things will get better. Sometimes knowing how long it takes helps too. If you're having a POTS flare, it may take weeks to feel better. If you're having a mast cell flare, it's probably going to take months to feel better — even when you're doing the right things for yourself. Reminding yourself: it's only been one month and my PT told me it's going to be at least three to six months — we're on schedule. A journal can help you with that as well.

[42:57] Dr. Linda Bluestein: Yeah, definitely. So coming up with these recommendations had to be really challenging. It's a really amazing thing that you all did. As soon as I saw it, I was like, wow, this is really, really incredible. What was the most challenging aspect of developing these recommendations?

[43:17] Leslie Russek, DPT, PhD: Well, from a logistic point of view, just scheduling people from Sydney, Australia to California and finding a time zone that works. One of the ways we dealt with that is that we had teams — I was the team leader in the United States, there was a team leader in London, a team leader in Australia, and we would have meetings with our group more often. Then the team leaders would come together and share with the broader group. People were so generous with their time. Some people came at 6 in the morning. Some people came at 10 at night. It just shows the commitment of the people involved.
[43:58] But coming up with a model was really challenging, and we went through a lot of iterations. In London they have their SPIDER model, which is coming out now, where people have symptoms in different systems, and they wanted to use that for this. But it made things even more complicated in ways that weren't directly related to the cervical instability. And then people said the model was too complicated. So I simplified it, and then they said, "Well, but you have to put this in and this in and this in." So then we put things back in. It was a little like herding cats — they would say they wanted it to be bigger and smaller at the same time.
[44:42] So trying to reiterate, it's like, okay, this is what I'm hearing from the group — is this what you want to do? But everybody was so committed to coming up with these recommendations that people were patient, and we just went through things over and over again until we streamlined it to the final two-page flowchart with the boxes. We wanted to make it user-friendly so you could look at a box and see the symptoms, the tests, or the treatments. It was just an amazing team to work with, and I was really fortunate to have such a group of people who were so committed. To me, that's the really amazing thing.

[45:27] Dr. Linda Bluestein: And for people to understand that a lot of these clinicians are in private practice, so they are spending all this time and getting no compensation for it whatsoever — doing this on their own free time, spending time writing an article that is time-consuming anyway, and then coming up with all these recommendations before even beginning to write it. It really is incredible. And I hope it helps people have more hope for the future, knowing that we have clinicians who are that passionate about helping people with symptomatic generalized joint hypermobility.

[46:09] Leslie Russek, DPT, PhD: Well, it's like the time that you're putting into having the podcast, right? We really are fortunate to have such a committed group of healthcare providers who are so devoted to their patient populations.

[46:24] Dr. Linda Bluestein: Yeah, definitely true. And for clinicians that are listening to this conversation, how do you think they would best use these recommendations? And are there any caveats that you want to add?

[46:38] Leslie Russek, DPT, PhD: The recommendations are pretty self-explanatory. There are even little checkboxes next to things where you can say, okay, this person is hypermobile, they've got the symptoms, their neck is irritable. We tried to make it user-friendly.
[46:54] But remember that these patients are complicated, and there are so many "it depends" issues. Is that a red flag? Well, it depends. Is that a sign of POTS or of instability? Well, it depends. Clinicians need to recognize that there's no recipe that works for everybody. And that's true with the interventions as well — can you do this intervention? Well, it depends. You can probably do it with a patient with moderate instability, but some patients won't tolerate it. So you really need to be listening to the patient and realizing that each patient is an individual.
Don't try to use it like a cookbook that works for everyone, but use it as a resource of ideas to help you figure out: if this isn't working, maybe I need to back off and look at the interventions that are appropriate for everybody. Maybe this person has something going on that bumps them up in their irritability status. So being flexible in how you use it and realizing that it's not a cookbook.

[49:59] Dr. Linda Bluestein: And for patients who are listening to this and are maybe accessing the whole article — if they want to try some things at home because they have difficulty accessing a knowledgeable physical therapist, they would start with some of those interventions for any level of irritability. That would be the best place to start, right?

[49:59] Leslie Russek, DPT, PhD: Right. Basic posture and body mechanics is good for everybody, and we think all patients would benefit from this. Patients who have a milder irritability may progress more quickly through, but everybody would benefit from paying attention to where your head is, paying attention to where your low back is, how you're sitting, how you're doing basic activities like brushing your hair, if you're turning your head to put your hearing aids in. These are basic principles that apply to everyone.
[49:59] But for patients who have or think they may have instability — if anything makes you worse, back off. Remember, you're an individual and what works for other people might not work for you. So listen to your body.

[49:59] Dr. Linda Bluestein: Definitely. Was there anything that you wanted to cover that we didn't talk about today?

[49:59] Leslie Russek, DPT, PhD: No, I think your questions really covered a lot of content. We really addressed the article well. I do have a weekly lecture series that I do for patients — I call it my Hypermobility 101 lectures. They're available on Zoom and on my website as well, if people are interested. For patients who feel like they don't have experts around them who can educate them, they can get a lot of knowledge from the Hypermobility 101 lectures, and they're welcome to access those on my website.

[50:16] Dr. Linda Bluestein: And is there a fee for those?

[50:23] Leslie Russek, DPT, PhD: Nope, they're all free. The recordings are on my website, and I do one live lecture a week that people are welcome to attend. It's an option for people to get education and get questions answered. I can't answer individual medical questions, but in terms of basic principles of what hypermobility is like and ways that people can take care of themselves — because ultimately that's what we have to do as patients, is take care of ourselves and develop a toolbox that helps us manage whatever is going on in our particular bodies — my goal is to give more people more tools.

[51:05] Dr. Linda Bluestein: And that's just a wonderful thing that you're doing. That's really, really amazing. And where can people find you?

[51:16] Leslie Russek, DPT, PhD: You can access my website — I can give you the link to my website, and that's probably the best way to access me. My email address is there as well. I'm semi-retired from Clarkson University, so they won't find me at my Clarkson phone number anymore.

[51:37] Dr. Linda Bluestein: Excellent. Well, you have been listening to Bendy Bodies with the Hypermobility MD, and our guest today was Dr. Leslie Russek, DPT, PhD. Leslie, it has been so wonderful chatting with you. Thank you so very much for coming on the podcast again to chat about this incredibly important topic that applies to so many people. So many clinicians need to know more about it, and it's just a really great thing that you came back to chat with me. Thank you for everything that you're doing to educate patients and providers as well.

[52:06] Leslie Russek, DPT, PhD: That is really important as well. Thank you.

[52:15] Dr. Linda Bluestein: Very good. If you found this helpful, follow the Bendy Bodies Podcast to avoid missing future episodes. Please leave a review and share the podcast so more people know about Bendy Bodies and joint hypermobility. Screenshot this episode and tag us in your story so we can connect. Our website is www.bendybodies.org, and follow us on Instagram at bendy_bodies. We love seeing your posts and stories, so please tag us using #bendybuddy. This information is not intended to diagnose, treat, cure, or prevent any disease. The information shared is for educational purposes only and is not a substitute for medical advice, diagnosis, or treatment. Please refer to your local qualified health practitioner for any medical concerns. We'll catch you next time on the Bendy Bodies Podcast.