S1E1 - When Pain Doesn’t Show Up on a Scan | Dr. Joshua Weaver | Care Beyond the Pain

Automatic captions from YouTube, shown unedited apart from name spellings; they may contain errors, especially in medical terms.

Tell me about fibromyalgia.

Well, first of all, I'm going to say right up front, I think it's a real syndrome. Um, I think a lot of people feel like it's not, and I think it is.

I I feel like it's a litmus test for how serious some doctors are as to whether or not they accept fibromyalgia as a diagnosis or not.

Hi, I'm Dr. Jason Seafferman and welcome to Care Beyond the Pain. In each episode, I will sit down with a provider, a person with pain, or a supporter to explore their experience and share their perspective on the pain journey. Together, we will navigate care beyond the pain.

I'm Dr. Joshua Weaver, neurologist.

Dr. Weaver, thank you so much for joining us today.

Can you tell us a little bit more about your background as a neurologist? Tell us about your practice.

Sure. Um I started out doing general neurology for a long time. Uh and after five six years I shifted more into peripheral neurology which is really dealing with spinal conditions and peripheral nerve disorders in the arms and the legs.

Non-brain things

non-brain things which is why I got into neurology but I decided after some time that peripheral nervous system was actually more interesting to me.

So what what do you do? What do you see? What do you treat within the peripheral nervous system? So I see a lot of conditions that uh deal with numbness, tingling, weakness uh of the arms and the legs. Honestly, peripheral nerves kind of go everywhere though. They involve every part of the body which is actually what appealed to me. Um and so I really see a whole gamut of symptoms and I do my best to diagnose and treat those things.

One of the things that we share in common is we see a lot of patients with very vague complaints, nebulous, enigmatic pain syndromes that can be hard to pin down,

right?

Can you sort of tell us how you approach this situation?

Listen, I think it's challenging. I think step one is you listen to the patient, you get all the information. So common these days is that people come in, they don't get the time of day when they see their doctor. And I think actually a big part of the issue is you have to actually sit there for 5 10 15 minutes and actually listen to them talk and you sort of figure out what's going on. But having said that because I just said nerves go everywhere.

Um, it is actually really sometimes very challenging to figure out where all that is coming from [clears throat]

because you can have lower back pain, but maybe that lower back pain is coming from, you know, a disc or it's coming from a nerve or a ligament or a tendon or a muscle or the SI joints, you know, that are coming right by that that lower back. So, sometimes it's really hard to figure out where that's coming from.

That's the joy of my job.

Yeah, me too. So listening that's that's the universal answer among all the doctors we've interviewed. Uh and again the point of this podcast is really to tell the story of the chronic pain journey through

providers experience and through patients experience and through patient advocates.

Right.

Um so as as a physician who sees patients who have been around the block and maybe have not gotten great answers um you listen to them which is which is essential. um what are some of the next steps you take? What what's in your toolbox?

So, I think the next steps that I take um after doing a full evaluation, listening to them, taking the full history, doing a physical exam, a lot of it is the diagnostic workup. And a lot of the patients that I see have already had MRIs, you know, so I look at those, we try to figure out what's going on. We do uh I do nerve conduction tests called EMGs, electromyiographies. I try to figure out how the nerves are functioning, how the muscles are functioning and that gives us a lot of information.

Uh but sometimes we are still left with questions and so a lot of times at that point it is you know trying to figure out uh maybe we can do uh diagnostic injections, maybe you can figure out you know if we inject at this point does that help your pain. Sometimes that actually helps in the diagnosis. For complicated cases, that's where often we have to go or I often send them to people like you to figure out how to how to navigate this.

You know, that's often where it happens.

That's one of my main tools.

Yeah.

So, one thing we talk about a lot is patients will get imaging and they're told it's normal.

I mean, nerve conduction studies, we know if that nerve is not like at least 30% damaged, it's not going to show up on the EMG. Small fiber neuropathy, things like that don't show up on the EMG. uh patients often think things like MRIs are the gold standard or EMG is the gold standard and if it doesn't show up on an MRI then it must not be a problem

right

how do you even neurography right it's it's a popular technique every patient with pedal neuralgia wants a pelvic neurography thinking that that's going to give them the answer how do you explain to patients this paradox that imaging isn't perfect

so I tell them a lot that that imaging is often the gold standard to finding a structural abnormality to finding a tumor to finding a bleed to finding whatever there there may be some sort of compression. Uh it may be the gold standard in finding something compressing the nerve but there are many many things out there that can cause irritation, inflammation, sprain, strain, all these things that can affect the nerve that we don't see on an image. And in that case, there often is no imaging gold standard, you know, and that happens.

And in that case, the gold standard is actually a good history and a physical and some treatment options that we use to help diagnose. And that's often where it goes. So I try to explain that, you know, in detail so that they kind of understand where we're coming from because a lot of doctors will just say this is the gold standard for this

and if you don't have it, goodbye.

That's not how it should be, you know. And we see this at the other end of the spectrum, too. Like patients will come in selfidentified with their L45 herniation

because that's on their MRI. They're convinced that's what's causing their back pain.

But we can't start with that and assume that that's it. We actually have to start from scratch. Good oldfashioned medicine

because how how often like is that actually the source of the pain?

Right. This I'm really glad you brought that up. I have a so I do a lot of teaching. I teach medical students and residents and there is a slide that I show from a study in I think 2016 where they took a bunch of healthy people, no symptoms whatsoever. They did MRIs on their lower backs from the ages of 20 all the way up to people in the ages of their 80s and they just showed how often it is that people have herniated discs, you know, dried discs, disc desiccation, uh arthropathy, uh whatever, what what have you.

and they did eight or nine different things that they looked at. And even in our 20s, it was about 25% of the population that had things already starting to show up on their MRIs. And by the time you hit 60, I mean, it was the vast majority of patients that had this.

So, I use that slide. I actually show patients that slide to be like, I understand that your imaging shows this,

but so does the majority of people your age show this. We have to figure out, does this actually match with what's going on with you? Yes. And it doesn't always, right?

So I that's what I do to try to sort of normalize their imaging for them. Yes. And say there's more that we need to figure out here.

Yeah. There's another study where they took patients with back pain and without back pain and had radiologists try to determine who had pain.

Oh, interesting.

And they couldn't.

Yeah. Yep.

So yeah, 100%.

Yep. Uh I I part of the reason I bring this up, it's because of the identity shift that occurs when patients are looking for answers,

right? Uh so many patients that we both see have been to so many providers, they may have been told it's all in their head. They might have been told it's fibromyalgia. Basically, no one just actually figured out what it was.

Uh and they're so eager to get an answer that once they do get an answer, it's like the the key that will unlock the solution to their treatment. But of course, at least in my experience, that's not always an accurate identity that they've assumed.

Mhm.

Is is this something that you see in your practice

all the time? I'm not even so sure that it's they need an answer. Sometimes they have reached a point where I think they're comfortable with the fact that no one has an answer. I think sometimes they need someone who will be with them on the journey of figuring out what can we do about this. And when this doesn't work, I have a plan. I have something we can try. Uh it's not always perfect, but I think sometimes that's what they need when they come in.

Um sometimes these chronic pain conditions just are are very elusive and you can't really figure out a very concrete answer. Sometimes you can, in fact, the majority of cases you can, but there's definitely a subset of people where it becomes really challenging to figure out where is this pain generator coming from.

And it's it's very frustrating for them. Uh it's frustrating for the doctors. I want to be able to tell them, you know, where it's coming from. But I think sometimes um the thing they are looking for is someone to help them through. Yes. you know, and I think that's where I think all doctors can actually sort of help with this. Uh, not everyone does, but I think that's what you want.

So, the the listening, letting them know that you're there for them through this journey,

which it is a journey, and that's again the whole reason we're we're doing this is really to highlight that

there's not a magic answer. There's there's rarely a quick fix because chronic pain is rarely one issue. You know, it may start as one thing, but

it rapidly through compensations and biomechanical alterations, things snowball.

Yeah.

So, yeah, having that journey and know knowing that it's an iterative process where we may not have all the answers. In fact, I usually don't have all the answers, right?

Uh, you know, it's it's really getting to know the patient, understanding everything that's going on and figuring out, you know, it's like a jumbled knot. You know, which thread to pull on first and then you only then do you know which thread to pull next.

Yeah. Iterative and evolving. So you may see someone, you know, who comes in and you're pretty sure it's that disc bulge and it's pushing on that nerve and they get an epidural and they're kind of better and then 6 months later they come back, but now it's the other side and now you're trying to figure out like what's new with this and moving target. Yeah, sometimes it can be um you you see people all the time who have a shifting uh you know number of symptoms that come and go and some worsen and some don't and it can evolve and that's what I mean by journey.

It means you have to be with these people to figure out okay so this is coming from that this is coming from that this we're not really sure but here's the things we can do you know that sort of that sort of thing. Can you talk a little bit about some of the conditions you treat that are maybe less commonly treated?

Sure. Uh I think you know it's actually kind of interesting. So I work at Wild Cornell and I we are at a peripheral neuropathy center um where we see a lot of neuropathy. So neuropathy is just a problem with the nerves. So that could be just about anything. Diabetes is the most common cause. Usually I do not see diabetic neuropathy. The primary care doctors have that down pat. They have their patients with diabetes who develop neuropathy.

They have numbness, tingling, burning in the feet. They know how to deal with that. I see a lot of the people who have these same symptoms but don't have diabetes and they don't have the top five common things, thyroid issues, vitamin deficiencies, what have you. And then it becomes my my issue to figure out what is the possible cause. So I see a lot of rarer causes of neuropathy. And then when you talk about neuropathy, there are so many other things that are um much more rare in terms of the possible causes of neuropathy.

So you mentioned small fiber neuropathy earlier on. That's a big thing that I see that is actually relatively rare. Doesn't feel rare to me because I see so much of it. So right uh that is actually a kind of neuropathy that affects the little microscopic nerves in the in the skin usually again affecting the feet and the hands but can go anywhere in the body. Uh I see that all the time. Uh that is a very rare condition but that's something I do try to diagnose and treat.

So that's a relatively rare thing. We see a lot of spinal conditions. It's usually the run-of-the-mill

herniated discs and things like that. Uh, but every once in a while you'll come across something that is really bizarre. You know, you'll see some kind of tumor or something weird. So, I see a lot of that.

Yep. I've seen my fair share of that, too. Yeah, for sure.

Can you talk a little bit just to get into the nuts and bolts of some of these neurology concepts because I think most people don't understand them. Can you talk about double crush?

So, double crush uh is a favorite of mine because I think it's actually more common than we think. Um, so that really just means that the nerve supply to a to skin or muscle is affected in two different areas. And the reason why it's so common is because there our body is designed in a way where there are common spots where nerves can get pinched. You know, simple as that. So you can get a pinched nerve at your elbow, right?

neuropathy because often how we sleep at night, you know, you bend your elbow and you do this for 30 or 40 years, eventually it'll get pinched in some people and it'll cause problems with your pinky. Fine. But another common spot where that can get h where that can get pinched is the nerve root up at the neck. So that same nerve that goes here down to your pinky goes all the way up to that one spot in your neck, it can also get pinched there, you know, just from wear and tear.

So, a lot of times we do see this double crush syndrome. The hard part is it manifests the same exact way, right? You're going to have the same kind of pain and tingling and numbness in this area. Sometimes there are clues. If you have neck pain radiating down to the area, okay, pretty clear it's from there. Or you have elbow pain radiating down to that area, it's from there.

But many people have both or just have this and you don't know exactly where it's coming from. So that's actually where my nerve test that I do, the EMG, comes in handy because it can sort of tell the difference between those things.

Yeah. Amazing. Uh how do you describe sensitization of the nervous system?

Uh probably badly. Um it's a it's a topic that's um it's a difficult topic. I don't think it's very well understood. I think it's a very clear syndrome and we know that it happens, but in terms of why it happens in some people and not others and how to treat it, I think is a really hard thing. So usually what I tell people is that when there is a problem with the nerves that is causing pain, those pain signals go to the brain.

And I tell people that that sometimes happens so frequently and so often over a period of time that the brain gets sort of stuck in the on position

and even when you take care of the problem in the arm or the leg or the back or the neck,

the brain is still hyperactive. And that's the central sensitization that can occur um where you will still feel pain. Everything looks great. You've you've decompressed the problem. You've fixed the nerve problem, but you're still in pain. Yeah.

And that's often what we see with that. So

I'll say the nervous system holds a grudge.

Yeah. That's a good way to put it. Yeah.

And then it doesn't take much to re-trigger it,

right? But then how do you treat it? And that's really tough. I I I don't know. I'm not 100% sure. I mean, I have theories and we try things. Uh I don't know that it's there's really a lot of like great one-sizefits-all.

Oh no, of course. But but there is a diagnostic iterative process for the sensitization as well.

Absolutely.

A lot of it is still maintained peripherally.

So it's

it's actually not all that common that the peripheral instigator is fully treated,

it often it often persists and as long as there's even a little flicker, I call it a gas leak, then that that fire will reignite. So you have to make sure that peripheral site is calmed and then that first stop on the sensit sensitization pathway is a DRG

and if that DRG is still sensitized we can treat the DRG you know just doussing it with local anesthetic will reboot it and that can be very helpful

right

if it's going through the sympathetic pathway of course we can do regional sympathetic blocks like ganglen lumbar sympathetics things like that or we can use you know sympatholytic medications so this is where things like proprenal taanadine even cloned patches can be really helpful in this situation And then of course we can go more systemically with lidocaine infusions, ketamine infusions. Um I'll use a lot of NMDA antagonists like mantene in this situation

and we kind of just figure out what that person's body needs to reset.

Yeah.

And we figure out how to flip the switch to turn it off for them,

right?

And then we know so if they do get re-triggered, we know what to do to to calm it down for them.

Right. I really like how you how you presented all that because it just goes to show you there are so many different options

and there's not a one-sizefits-all and I've had so many patients do the whole gamut of those things. But that's actually what happens in chronic pain. People need to be ready for the fact that you have to be a little bit of a guinea pig. You have to try things out. What works for you? What doesn't work for you? What causes side effects? What doesn't cause side effects? And you have to try things out. You have to be ready to jump to that next level.

hopefully not needing so many advanced you know uh uh sort of invasive procedures but sometimes it gets there you know absolutely

so there there's this duality that I try to share with patients where everyone is unique everyone's an individual and everyone wants to be treated as an individual right

but at the same time we don't want to experiment we don't want to go through the trial and error phase right so so there's this little bit of a paradox that we have to navigate and my best explanation for that is you know there are patterns that we know that happen in the human body universally, but how they represent in each person. It varies from person to person. So if we recognize the constellation of symptoms that's going on in your body, we we know what's going on.

We just don't know every little piece that's in play for you. And we don't even always know the order. There's a lot of chicken and egg things that happen between the neck and the shoulder, for example, uh that we have to tease apart. Uh and some of these can even be self-feeding cycles that that keep things alive. So we do have to take an iterative approach to it where we try something and then that will clarify for us what's going on in that particular patient's body.

Yep.

And we use that information. So even if we try something, if it doesn't work, if it flares, we don't want that that to happen. But if it does happen, that's

that's essential information, right?

Because there's no way we will get to the point of finding a treatment if we don't know that that doesn't work.

Yes, I'm with you 100%. And I think that's the right way. When we think about experimenting, we're not experimenting with a placebo. You're not getting a you're not getting a sugar pill. You're getting things that are going to work for a ton of people

and we hope they work with you. And if it doesn't, we have other things we could try.

And even the experimenting, I don't like that word for it because it's really not experimenting. We have a hypothesis, right, that is founded

with some logic, right? Both in terms of what we know to be occurring and and ideally with some imaging confirmation or some physical exam confirmation, right? So, we have a working hypothesis that we're looking to confirm. Right. Right.

And we can only know if it's correct in hindsight. Like there's no way that I can know with confidence, with certainty what's going on in a patient unless we've actually gone through the process of fixing it and it stays fixed. Only then can we look back and say that was it. Because how often and I'm sure you see this a lot you know patient comes in disc herniation ridiculopathy they get an epidural they feel better but then 3 months later it comes back or two weeks later it comes back so was that disc herniation really the end of the problem or or or was it just like the final end of the problem the problem was actually much deeper and we have to go back and figure out well why did they have that disc herniation in the first place because sure we can calm that disc down with an epidural but if we don't figure out why that disc is being aggravated and fix that they're going to stuck in the cycle.

Exactly.

So, so in that situation, sure, you can say it was the disc herniation, the epidural helped the disc herniation, but that's not a robust, durable diagnosis or treatment,

right?

So, we we still didn't fully understand everything,

right? I sort of love that because sometimes I have patients that come in with a huge stack of papers, you know, they've they've had a bazillion images, they've tried a lot of medications, they've tried injections, they've tried this, some things have worked, some things haven't. D and when I see them I can say after I have time to review everything this is what's going on with you and they think I am the smartest guy in the world but the fact is you had all these doctors before me who were actually doing who were doing the things you need to do along the journey which is really hard and really frustrating.

So, I get that. Uh, but it makes it a lot easier for me at the end with good documentation to say this was working, this was not working, you know, and therefore I think the following things and this is your diagnosis and this is what you have.

I could never do that if they just showed up,

right?

You know, right at the beginning, I would be starting from scratch and I would be doing the same exact, you know, sort of path. You know what I mean? So, yeah,

I just spoke to a patient about this today. Having linearity,

that's not a word, is it? I think it might be

continuity having continuity of care with a provider that they know, like and trust.

Yeah.

Because it is a journey and you spoke to this earlier like

if you know patients who are des legitimately desperate to get answers and to feel better may go down the path of seeing every doctor they can find but that's that there's not going to be any continuity and because it's an iterative process where you have to go through this journey and figure it out,

right? Like it's it's really hard to get a solid understanding without some continuous care from a single provider who's invested in figuring it out.

Right. Right. Yep. And that's part of the huge frustration that a lot of people have. You know, I get it when people see me at the beginning. I I try to frame that that it's going to be frustrating because I've seen it too many times. Thankfully, I've not dealt with it personally, but I have seen it. So, I sort of have a sense of where this goes. I try to tell people, I'm not sure you can really understand it until you're in the middle of it, though, and and really feeling all of this.

And it's really hard. It's really hard.

Uh, tell me about fibromyalgia.

Uh, well, what do you want to know?

I think fibromyalgia, um, well, first of all, I'm going to say right up front, I think it's a real syndrome. Um, I think a lot of people feel like it's not, and I think it is. Um I have seen patients where I will do my exam and I will push on certain you know areas and they'll be very hyper sensitive. Um that's sort of the

the clinical criteria although that's evolved over time. Um I do think there's a bit of a spectrum of chronic pain disorders where fibromyalgia kind of kind of fits in there. It's a little amorphous. What causes it? I don't think we know how best to treat it. There are some medications that are FDA approved for this sort of thing. Um there's a lot of lifestyle modifications that can occur to help treat this kind of disorder. Uh it's a chronic pain disorder that is really challenging, you know, and I think part of it is the nervous system sort of being hyper sensitive.

Uh whether that's central, peripheral, both probably.

Um

I don't think we have a full grasp of what it is or why it happens.

And I think that's where we're at with it.

Yeah. You know,

I I feel like it's a litmus test for how serious some doctors are as to whether or not they accept fibromyalgia as a diagnosis or not.

So, I I kind of agree with you. I think it's important to clarify that it is actually a real diagnosis, but it's widely overused and misdiagnosed.

Yep.

And so, we see plenty of patients who come in carrying a diagnosis of fibromyalgia, which I, you know, just make a bookmark of that. But I still I don't just like with the L545 disc, I don't jump into that as the answer. Mhm.

I really want to make sure there's not some seroriatic emphasis in the background, some small fiber neuropathy, some something else.

But but I agree with you that with I think of fibromyalgia. So we know that it's super common after trauma, right? Like we know there's a study looking at auto accidents, much more likely to have fibromyalgia. What really sealed the deal for me that it was a neurologic process. I had a patient with MS who came in with fibromyalgia on half of her body after an MS lesion in the neck.

Oh wow.

That's very interesting. So ever ever since that point, I really think about it as the descending inhibition pathways are malfunctioning and and so the brain is just more sensitive to pain. The normally the spine regulates what pain signals get to the brain.

I I I think fibromyalgia is is addition disinhibition of that process. The brain can no longer self-regulate. And we see this with opioid induced hyperalesia. I'll see it with patients who use ketamine too much.

Interesting.

Which has it has a hyperalia effect as well.

Yeah. So they have to take a little ketamine holiday. Uh but but yeah, it is an absolute condition. It's just not as common as it is used.

So a lot of people use it. Uh it's a it's one of those waste basket, you know, sort of sort of syndromes where a lot of people say you have chronic pain. Boom. Fibromyalgia. Another one is myofascial pain syndrome, which I'm not even sure what that means anymore, right? It's more of a it's more of a descriptor than it is a diagnosis.

I think there are some interesting work. There's a group at at Mass General up in Boston who looked into fibromyalgia and looked at the number of people who had skin biopsy proven small fiber neuropathy and so they took people with fibromyalgia did skin biopsies and all them and it was like 30 to 50%. I mean it was a huge number who had abnormal small fiber nerves. Question is do people with fibromyalgia have also small fiber neuropathy? Were they misdiagnosed as fibromyalgia and do they have small fiber neuropathy?

There's so much overlap in the symptoms that it's really hard to tell.

Well, there's there's no gene test for fibromyalgia. There's there's no other than the clinical tender points, which is pretty soft, right? Yeah. It's kind of like how we diagnose hypermobility, right? Like we have consensus criteria that were decided by a group of people in 2017, not based on any scientific evidence. It's just consensus opinion. Right? I should be careful saying all this out loud. they're going to meet again this year allegedly and change their mind about what diagnoses hyper mobile EDS from other things.

But I I only say this to say, you know, there was a study that looked at people who met the criteria for hyper mobile EDS and they did genetic testing and 26% of them actually had some other condition that was causing hypermobility that led to them getting the diagnosis of hypermobility EDS. And that's not to say that I still think hyperbility is underdiagnosed. But I think part of that diagnostic process has to be doing the thorough workup to make sure that we actually understand the how, what, and why behind to be certain that it is the correct diagnosis.

Right? And actually all that work that is being done to figure out criteria to diagnose these disorders is tremendously important because we don't have a gold standard. We don't have an imaging gold standard. We don't have a biioarker that can tell us what this is. All we have is clinical findings and those things are inherently soft compared to objective findings from other things. Right.

Yeah. But trying to make a thing out of it rather than saying examine the patient, treat the patient based on what their exam shows you.

Right. Right.

I

you you take that diagnostic criteria, but to your point, you have to make sure you're ruling out other things. like yes they fit the criteria for X but you need to make sure correct Y and Z are not there right I mean I think that's really important

I think it of it more as guidelines

than strict diagnostic criteria because tell me if you have a patient with hypermobility spectrum disorder versus hyper mobile EDS do you treat them any differently

right

so one point on the baiton score makes all of that difference no the treatments are exactly the same

right I think a lot of this also boils down to uh when you're thinking about research right you have to have some kind of clear criteria to allow people so that we can better understand these disorders, right? But you're right that you're going to bring in a lot of people who don't have that disorder because these criteria are not perfect.

So, I guess to be fair, I'm guilty of what I just went off on.

So, we see a lot of patients with pelvic floor dysfunction, right? And pelvic floor dysfunction can be a million things. One thing that it can be that has not a diagnosis is pelvic donia. So just like focal donia, cervical donia or facial donia, there is a diagnosis of pelvic donia that has not been described and I only recognize this because I know what donia look like because I treat other donias and then I see it in the pelvis,

right?

And doesn't respond to trigger points, doesn't respond to physical therapy. It does respond to toxin.

So

what do we do? We created a a scoring a pelvic donia scoring scale, right? So we have an objective measure semi-objective which you know has patients rate all of these different symptoms related to their pelvic floor function

and then we validated it to show that it's valid and then the next step is to trial toxin for pelvic donia. So I basically did the same thing

no scientific evidence for it. I just made something up and we tested it but based on the available you know understanding of the condition it matches which is great

right

and now we just have to

but that's how you have to do it and then you have to have an open mind to evolve over time with more research how that works sure but you have to start somewhere you have to do

you have to start somewhere

absolutely so as a neurologist I do a lot of diagnosing try to figure out where the pain generator is

I do a lot of treatment in terms of medical treatment and some mindbody therapies and integration therapies. I try to work on that. Um that is something that's in my purview able to do. Even the pain medication though is a lot of the nerve or muscle pain medication. Um once it gets past that point, I personally need to enlist other you know disciplines to help me out and pain management is a huge one. That's actually how we met was through a mutual patient.

Um, and I would love to know, you know, kind of how you interact with non-p pain management doctors in terms of the like the the treatment for for your patients because I feel like it's extremely important, but I don't know people who just do the injections, is that where you stop? Do you just do the injection, you say, "Go follow up with soand so or do you try to be part of the treatment team?" Like, how does that work for you?

So, we call those needle jockeyies.

I love it.

Yes. Needle jockeyies. It's a job. It's not a bad job. You know, you just clock in, clock out, do injections all day long, go home, have dinner.

Uh, the way I engage with other nonp pain doctors is through the the commonality of our understanding of the physiology, right? So, if we can unite on our understanding of what's going on in that patient, how it came to happen, why it's not getting better, what needs to happen in order for it to get better, I feel like that's the common ground for conversation.

Yeah.

Right. So if if we both see a patient with neuropathy and we examine them and they also have inflamed sacraliac joints and their wrists are a little stiff and then we do a little workup and they have an autoimmune condition. Well, most likely we'll agree that they need a rheatologist.

Right. Yep. Exactly. Listing another person.

Right. And and so often you know these neuropathic process especially like the small fiber neuropathy it's usually due to something. Yeah. Right. So if you're seeing a patient with small fiber neuropathy or if I'm seeing them with complex chronic pain and they hurt everywhere and they can't understand it and I distill that down to at least in part a small fiber neuropathy,

right?

Like we we unite on our understanding of what's driving the sensitization, right?

And then we talk about what to do about it. It might be something like IVIG. It might be something like a rheatologist,

right?

You know,

but [clears throat] I love that you're bringing all that up. I mean, I think it takes a team and I think also it's much more than just pain. So, I love hearing from a pain management doctor that it is more than just absolutely pain.

I I was just speaking with a gastronurologist earlier today. So, we have a mutual patient who has motility issues, right? Now she also has multiple hernas

and you know of course the GI doctors working with all the motility agents and all these things but the truth is if there are hernas that causes visceral pain and the sympathetic nervous system is programmed to slow the gut and so if there is visceral pain that's going through the sympathetic nervous system there's an automatic reflex just to slow the gut.

Yep. And there's this positive feedback loop that happens with hernas and constipation where the more pressure there is inside the abdomen from the constipation, the more pressure there is on the hernia, the more pain there is, the more the gut slows, right?

So they get stuck in this feedback loop of of hernia sensitivization. So you know, until those hernas are treated, there's going to be a motility issue,

right?

And and it's not necessarily something that the GI doctor is thinking about.

Right. Exactly. At least not right off the bat. Right. I mean, this is actually, you know, one of the things I see all the time and I try to address with my patients, and it sounds like you do, too, is people come in with chronic pain, and yes, the goal is to get rid of the pain. Although, in reality, what I try to tell people is the goal is to reduce the pain. With chronic pain syndromes, it's rare that you get rid of the pain entirely.

But I do focus on people's depression, anxiety, sleep disorders, autonomic symptoms that occur in other parts of the body. There are so many different things that make the pain worse, amplify the pain. Um, and a lot of times people don't get into that. I think the worst thing you can do as a doctor when someone comes in with chronic pain is say, "How are you feeling? Are you depressed?" right off the bat. Because automatically that patient goes, "Uh, they think I'm crazy.

I'm done. I've dealt with this before. I'm not crazy. I'm in pain. How dare this doctor do this?

So, I try not to do that right up front, but in my mind, I'm thinking there's probably some underlying psychological sleep issues, physical issues from the rest of the body. There has to be. Every patient with chronic pain has this stuff. It's not the sole driver, but it absolutely amplifies

and it's not their primary concern,

right? But it is an important concern and it's something I try to address not necessarily on the first visit but I do try to address it over time. Yeah.

Um and just what you were talking about with GI motility not something everyone thinks about right off the bat you know but it is an important thing you know so enlisting other doctors to help with that sort of thing is really really important. So I think the first thing you said is establishing the goals up front, right? Like I generally want to understand what what is it the patient wants, right? Like what are they looking for? And of course less pain is part of it, but there there's some functional extraction from that.

What do they want to be able to do that? Like set some reasonable goals because again refocusing on the life they want to have will will help keep things in perspective. And the second thing you said is reducing the pain. The goal for me is really understanding what's driving the pain. Mhm.

Because we sure we can give medications to numb pain, but that doesn't work very well. We're much better off if we understand why the pain is happening, how it came to happen, why it's not getting better,

right?

Because those are action points. And if and if we can address those things, then the pain will naturally get better. That's that's really the only way to durably treat pain is to figure out the root cause and address that.

Exactly.

So, it's it's funny because people come to a pain doctor expecting me to just give them pain meds or be a neop, right? A band-aid. I mean, but but at the same time, there is a desperation for relief. So that that's absolutely one path we go down, but it can't be a path in isolation or they will not have any long-term success. My job is really a diagnostician to figure out what that problem is. And then most of the treatments that I render are structural.

They're usually treating an underlying source. It's not just steroid to shut something up,

right? No, I think that's really important. I think one of the hard things I see, especially in a lot of my older patients, particularly the ones who magically lived a life for a really long time without pain and then they hit 80, 85, and now things are starting to hurt and this was a shock. You know, this is not what they had to deal with. A lot of my other patients are in their 40s, their 30s, and they've been dealing with this and so they know awful well what that's like.

But some people really go up until a really long time and all of a sudden the body is starting to break down and it's starting to hurt and that's harder because we don't really have a great way to fix just chronic arthritis and wear and tear you know we have some things we can work on those but they're not great all of them you know and sometimes I do think the human condition when you hit a certain point is to be in some amount of some chronic pain and I think sometimes you have to normalize a little bit like this at some point may be where we're at and we can try to make it better and we can try to reduce it but we may not be able to get rid of it entirely.

So this is where I have hope.

Yeah, I love this. Regenerative medicine is

well I I mean I think medicine is evolving on this front, right? Like so peptides first off of course nothing is FDA approved and you know it's all completely experimental at this point but

I think a lot of them show promise

and I'm not going to name any names. I don't want people going out and buying and self- injecting because there's enough people doing that already.

Yep.

But I think there's

there's a lot of very promising peptides that are being looked at for that.

And then regenerative medicine as you mentioned like I use more regenerative medicine than anything else. And I do have patients who come in and I'll inject seven joints on a single visit.

Yep.

I I had a woman yesterday I just injected I don't know how many joints in her hand. I lost count.

Uh because it's helpful.

Yeah.

Right.

100%. And and the thing is with regenerative medicine, I've actually seen some of these joints look less degenerative, which is shocking. I never would have thought that could happen, right? Because, you know, once we see osteoarthritic changes, we pretty much think of them as permanent. Y

but I've got a patient where with regenerative medicine, like we actually reimaged and it looked better, which is kind of surprising.

But I agree with you, that is the frontier. That is where we need to go.

So the body can heal. The body can remodel itself.

Well, we know the body can heal. I mean, especially in in younger people, the body heals all the time. As we get older, that gets worse. But I do think we have some tools that we can use to help push that along, right?

Um,

I just don't think we're there yet in terms of knowing

the actual dose and what works for everyone. You know, we don't know that stuff, but that doesn't mean we shouldn't try and that doesn't mean we shouldn't safely try, but I mean, I think those things are really important to do,

right? So this is where there's a balanced conversation with the patient about what their goals are, what they're open to doing, and if something is uncertain, if some I mean, if you look at pain treatments in general, our research sticks,

right? Like and there's a lot of challenges around researching pain and it's just because pain is a signal. It's not a focal anatomic problem. But even if you look at lumbar disc herniations and you look at epidurals for disc herniations,

10 patients are going to present differently. You know, a number of them are going to get better with no intervention. a number of them are not going to get better with you know without intervention and some will respond better than others and it's it's very difficult to pinpoint and the other thing you mentioned before it's often not just one thing that's causing pain right uh so having a treatment like when we research things it's we want a very focused treatment that treats a very focused thing that we can measure objectively and precisely and with pain that's almost impossible

exactly yep

I mean if you have something like trigeminal neuralgia postropetic neuralgia something discreet like that makes it much easier but with the more common issue like neck pain, back pain.

There's five different causes.

Yes. And they all happen together, right? Disc herniations don't happen in isolation. Meniscal tears and they don't happen in isolation. They happen with five other things. Exactly. And they all have to be treated together and they all present slightly differently in each patient and each patient responds slightly differently to each of those treatments that's needed for each of those structures.

And that's why surgery fixes some of those things, but that's why you get failed back syndrome and all these other situations. It's because you're treating one part of it, but you're not necessarily able to treat all the parts of it. And so people are left with certain pain. It's funny you were talking about this like as a neurologist like this is exactly the world I live in all the time. Yes, there are those discrete focal things, but the nervous system goes all over the body, does all sorts of things that we can't predict and we don't know that well.

And that's absolutely the world I live in. I think, you know, those regenerative medicine uh capabilities that we have for joints, uh that's where it's going to go and it's going to be great for joints and bone, but for the nervous system, we're so far off. I think I think there are things out there, but I think

promise it's going to be after. I can tell you that for sure. It's it's going to take longer, you know, to figure that out. Yeah. Yeah. Yeah. We did a study uh with spinal cord stimulation to treat neuropathy pain. So normally spinal cord stimulation, so basically inserting leads into the spinal cord and stimulating the nerves there

can help with spine pain, back pain, that's what we typically used it for. But um there was a study that was done that looked at um neuropathy pain. So

diabetic peripheral neuropathy.

Exactly. And doing spinal cord simulation there. And that study led to the FDA approval of that device for diabetic neuropathy. But there was a little sidehoot on that study that showed the uh the nerves in the in the legs may actually be regenerating with spinal cord stimulation. And that's one of these regenerative like is there a way for us to stimulate nerve growth via that? So that's one of the things we're looking into now. There's a study that's happening right now that we're doing, you know.

So I think there's so much stuff that's like super fascinating in there. It's just it not there yet, but I think there's going to be things, you know, in the pipeline.

Yeah.

That's super cool.

Yeah. Yeah. Very cool.

So, let's talk about building a more holistic care plan. So, of course, we can offer these very specific treatments, medications, injections. We send people to physical therapy. Maybe we even go as far as pain psychology, right, which we do quite frequently because, as you said earlier, it's essential to address the the psychological sensitization that happens from chronic pain. uh what else do you typically fold into your treatment care plans? [sighs and gasps]

So, you know, I talk a lot with people about you. I talk a lot about our medications, our injections, the things that, you know, the normal sort of medical school trained us for this sort of thing. But I do think once these patients leave the office, it's their life, right? So, what do we do? And so, I talk a lot about sleep hygiene. I talk a lot about nutrition. And I'm not sure I know the right nutrition that's going to fix their pain.

I don't think that exists. But I do think there are things out there. Exercise, nutrition, sleep, mood stabilization, all of these things. Uh preventing social isolation, these things that we don't often talk about, but really we should because I do think they play a huge huge role. Um, I've had people I've had a couple of patients who I wish I had written the prescription like leave your job, you know, like go go move to another country because I've had a couple people do this, right?

And they were like, wow, I feel a ton better because I didn't realize how much stress I was under and what I was actually dealing with. I didn't have the social support that

exactly. But I mean, so obviously it's not practical for all of us to do that. But I do think there are certain things we can be more mindful of and I think there are things we can do and I really think it makes a big difference in terms of our like physical manifestations in terms of what happens. So I try to be really open with people about all of that. I wish I had more time with everyone but yeah I think

that self-awareness is super important. So I mean we can start with the physical exam, right? Because I think it's during the physical exam when you're able to isolate that pain and the patient knows that you know that that pain is real and that you found it and you like that's that first lockin point where you really establish that relationship. Up until then it's all talk, right? But I I think other points where you can help patients have some self-reflection to recognize the impact of different things is like you said when they go on vacation or you know not go on vacation but they take off work and maybe they took off work because of the pain they're able to reflect back and and you know as long as they're paying attention to what they're feeling and they're integrating that change into their understanding of their own body.

Yep. It becomes useful information.

Yep. And by the way, I've seen the flip where someone will take off of work because they're in pain and they can't deal and they worsen because they're sitting at home on the couch, their spouse is at work, they're home alone

and they just get more and more depressed and so like I didn't want to vilify work because sometimes work gives us meaning sometimes that actually helps us. I think again case by case scenario sort of situation but I do really think that kind of thing being mindful of you know

what is my social structure like how is my pleasure in life

right exactly that quality of life is super important and I really do think it it directly

uh impacts pain you know and I think that's an important part

let's let's go off on a little tangent here because you made me think of it leela def so like

so many patients that we see I'm UC2 have been told [clears throat] it's all in their head. They're they're gas lit, right? Like they're basically the doctor they saw couldn't figure out what it was, so they said, "Oh, it must just be in your head, right?"

And of course, smatapform pain disorders do exist.

Y

but when they exist like Lebella France, can you talk about that a little bit?

Yeah. Yeah. So, I actually love this diagnosis. Um it's a very tricky one. Uh so, we could probably spend the next hour on this. Uh but we only have 10 minutes left. But what I was going to say is um I think a lot of a lot of pain well let me backtrack how we talk to patients about uh smatapform disorders or functional neurolog neurological disorders.

And by the way I hate that because I'm a functional doctor. I'm a physiatrist. I'm all about physical function. When someone tells me I have a functional disorder, what do you mean you can't walk?

You're right. It's a it is a it's not an apneame and if you do an EMG that nerve functions just fine.

Yeah. Yeah. That function is fine. functional disorder. It is it is fraugh with a lot of

trying to whitewash you know a pig they call

I hear you I hear you that's the word though FNDS so I'll use it because that's the word but smatapform disorders or these disorders that are all in your head quote unquote I try to tell people look I'm a neurologist so everything is in your head everything except the peripheral nerves well even those go to your head right I mean those signals go there and no I hear you I hear you trust me I hear

they're not just in your head

they're not just in your head

they're in your feet Right. But how we how we take those signals and what we make of them, that's neur. And I truly, you know, try to tell people and I really believe this that when there are chemical imbalances, neurotransmitter receptors, when those changes occur, we do get physical manifestations. It's obvious. I mean, that's why we feel we feel Does the pain get worse when you're stressed?

Right.

Yes. Of course. Right. Like, can you think about the pain and make it worse in your own head?

Yeah. Yes, of course. So, can the opposite also happen? Right.

Well, we say yes, of course. But some patients feel like that's weird. And I'm like, and I'm there to normalize that's 90% of the patients I see when they tell me they're stressed out, their pain gets worse, right? When they're horribly depressed on the couch,

their pain gets worse. They can catastrophize. That's what happens.

Linking those two things together is the is the bridge, right?

But

yes, sorry, keep going. Well, no, I try to frame it in the sense that um there are some disorders where structurally we don't see a problem. You know, we don't see a compression of the nerve. We don't see the things we typically might see causing whatever symptoms they're having, but those signals for whatever reason are being interpreted in the brain because of some kind of imbalance that does cause these symptoms. And that is stemming from the brain. So it is in your head but it doesn't mean that you're crazy but you know

go going back to our diagnostic criteria you cannot prove a smatapform disorder

right it's a

unless you treat it

diagnosis of exclusion

sure right but if you do some ect and their smatapform gets better then you can prove it

but otherwise you can't prove it

true that's going to change over time too um there are

some functional MRI

yep there are I mean there are studies that do show actual changes that occur right on a transmitter level. You can see it on the brain.

That also happens when there's real physical pain. So, how do you distinguish and say that there's not real physical pain,

but they Well, I think there is real physical pain,

but it's in their head.

Yeah. So, I'm going to

Well, now we're getting matrix about it.

Yeah. Exactly. Right. Right. Right. So, this is this is a situation that I encounter a lot where they were told by a neurologist that they have a functional neurologic disorder, but then I see them and examine I'm like, "Well, actually, it's it's thoracic outlet." And they're like, "Well, why didn't it show up on my thoracic outlet MRI?" and well it's a it's a transient issue right like and these studies are not perfect right so just because the doctor couldn't diagnose it and they told you it's all in your head they just didn't know what they were looking for right

so that's why I say that there's no way to prove it except in hindsight

no no my point being down the road I'm hoping we have uh some kinds of tests or biomarkers or something that we can use to help prove that there's at least a component of this going on

but isn't it with smataphifor disorder doesn't the brain look exactly the same as though there was a physical like Actually, I think when you look at functional neurological disorders and so I'm not thinking solely of pain. So, I'm thinking of other disorders.

Yeah. Or pseudo seizures. Like if you look at pseudo seizures versus epileptic seizures.

Well, you can tell the difference on EG with that EG, but I'm thinking more with pain signaling.

But you can also see a difference with functional imaging where it can look normal in people with seizures and you can look at functional neurological disorders and see that there's a difference. Right. Interesting. So I do think there are some imaging biomarkers that are not commercially available for everyone. But I do think that's going to be another frontier. That's going to be another thing where we can potentially try to get at that a little bit more. I mean the tricky part is exactly what you're saying.

When you look at seizures, for instance, functional seizures versus seizures, you know, people who have functional seizures, there's a huge percentage of people with functional seizures that have true true epilepsy, right? Yes. So you will probably see this with pain, too. You'll have your guy with thoracic atlas syndrome that wasn't really diagnosed before also probably having some central and we talk about how pain can be amplified. We talk about how the brain prefers a pain signal which is very concrete and anatomic to an emotional trauma that

you know is too difficult to process.

Right.

So yeah.

Yeah. But I think that's going to be one of those frontiers I hope uh where we get better at actually diagnosing functional disorders. And I I agree with you. I'm not a huge fan of the term, but diagnosing those disorders uh not so much as a diagnosis of exclusion, like ruling everything else out, but actually having a test to say this is part of what's going on.

It's really hard to exclude everything. Yeah.

How do you exclude everything?

No. Right.

You go to the doctor, say, "Test me for everything."

Right. Which some patients do, but

is not a possibility.

Exactly. Exactly. But then then the next step is how do we retreat them? That's a whole other topic which I'm not sure we fully understand either. Yeah. But yeah. Yeah.

Do you do a lot with mindbody therapy? Do you talk about this with people?

This is a big broad topic.

Yeah. It's true.

So my understanding of mind body

Yeah.

is again it's also broad and this is another topic that's misused and co-opted in harmful ways not just helpful ways. you know, like the John Sarno school that it's all in your head and you can train yourself to think that it's not real,

which sure you can do self-hypnosis. You can learn I I work with hypnotherapists who will train patients to self-hypnose and they can reduce their pain appreciation,

right?

Which is a phenomenal tool to have. And if a patient wants to learn that, I'm all about it.

I've had patients similarly do that, right?

And that's that's great. Uh it doesn't work for everybody,

right? Uh, and if a patient tries to do that without the proper training, they end up just feeling super guilty.

And there's a lot of self-lame. And I've had more than one patient be suicidal from seeing a practitioner who told them, "It's all in your head. You can't see any more actual real doctors." Right.

Uh, you just have to like pray the pain away.

Yeah.

So, so I'm ky when we talk about mind body as a group. When I think of it, I think more things like EMDR, tapping, working with a pain psychologist who uses cognitive behavioral therapies, which we can use to regulate the autonomic nervous system. Uh, even just doing like a body inventory, which is kind of like a meditation, but you know, with your eyes closed in a peaceful environment, just wandering with your mind from one area of the body to the next just to see how things are, just checking in.

Yep.

How do you think of mind body? Similarly, I I agree with you. It's very vague. It's very nebulous. It has the potential for harm actually because if you're if you think you can just, you know, mind over matter control everything. That's not how that works. But I I think it's a useful tool and I think when done appropriately, it can help uh as a good adjunct to other therapies, you know, to help reduce pain. Uh I everything you mentioned is exactly the kinds of things BOF feedback is another one which I think could be useful.

um progressive muscle relaxation, which is similar to a body scan, but you actually like contract and relax muscles. I think all of these things can be really useful. There's some data for these things. So, again, as long as you're doing it in a controlled environment that's that's, you know, people are supervising and you're using evidence-based medicine for these kinds of things, I think it's useful. So, I was just curious like what because a lot of people sort of poo poo those things and I'm not sure.

I think they're real and I think they help, but I don't I I agree with you. You have to be really careful with how you use them.

You know, some of these techniques too, it's the first time a patient gets some physical sense of control over their body.

Yeah.

Like so much of pain, people feel like they can't control their body. They've lost control. They're out of control. And I think this causes a lot of the catastrophizing.

Yeah. That we see. So, if a patient can do some progressive muscle relaxation and actually gain confidence in their ability to engage with the body that has betrayed them,

they they can start to feel grounded.

It's actually interesting. It's thinking about the pain is not a betrayal. It's a signal. You know, it's there to tell me something and I can work with it. There is a lot I think that can be said about reframing, you know, a lot of CBT is about that cognitive behavioral therapy. I I I do think it's actually fundamentally important for a lot of people, not everyone, but I do think it could be really helpful.

This is neural linguistic programming.

Yeah. Yeah.

You know, when patients say, "My pain," I try to say, "No, the pain." Right.

Ah, very interesting.

I I almost never say your pain. Tell me about the pain. Tell me about the headaches.

I actually love that. I haven't heard that before and I love that.

What do you feel?

Yeah. Yeah. I think that's

Well, I feel my disc. No, no, tell me actually what do you feel?

Right. I really like that actually. I like that a lot. I'm going to start using that. Thank you. Of course. Uh, final topic.

Yeah.

How do you know when a patient doesn't need you anymore?

Patients always need No, I'm just kidding. Um, uh, I think that's actually really hard. And I think part of that is a discussion that I have with the patient, you know? I mean, if the patient truly doesn't need me anymore, and I think they do, but they don't, they'll just leave. And that's fine. I do have a fair amount of patients who I think we've diagnosed everything. We've treated everything and then they just like being that as part of their routine and they feel comfortable and they're also a little nervous that something might recur so they just want to keep tabs.

Uh

and I I have to say I kind of buy into that too. I'm okay with that. If I try to um if we were meeting every 3 months, I try to expand that out and eventually do like a yearly check-in and I have some patients where I expand that out and do a followup once every 3 years so you don't become a new patient. But I've had that, right? Uh I don't I don't really like to discharge a patient even though there's no active issues.

I just it doesn't feel right, you know? So I try to work with them on it,

right? So this is what we call maintenance. Yeah. So, I I I usually think of it when we fully understand what's going on in the patient's body, when we've figured out what treatments they need. Yeah. When they've learned to assess their body and they really have agency over their body, they don't need me anymore. Yeah. Like, they might need some Botox every 3 months. Things may pop up. They may need a touchup here or there with different injections or whatever, but more or less they know how to manage everything, right?

Like, we figured it all out. There's no question left, right? There's nothing left to solve. no more discovery work to do and the treatments are pretty much set. So, right there's often a lot of anxiety as you said in this phase because you know up until that point the patient's really been focused on the mission on the journey. They've been fighting the fight and now they don't have to anymore and now they can really question what have I been through like and who am I now?

Right? Like I was this person before I couldn't be that person anymore. I had to be the pain person. Now I don't need to be that pain person anymore, but I'm also not the person I used to be. Yeah. What now? But so that's actually part of the job that I love, which is being the witness to that transformation. And I'm happy to serve as the witness when they come in once a year and they tell me all the amazing things they've been up to, all the things they're doing.

How's your pain? Oh, my pain's fine. And so like that's the whole point of the visit. And we have a 15-minute conversation about everything and they're doing great. And then I tell them

great like keep doing great you know and sometimes I think they need to hear it but also it's lovely for me to see you know it really is it makes me feel like there's value in what we do as in our profession you know what I mean so yeah I I don't mind that at all.

Awesome.

Yeah.

So thank you for joining us today.

Thank you. Pleasure to be here.

If patients wish to find you how can they find you?

Uh I am at Wild Cornell Medicine. Um so they can they can Google me. I'll be there. Uh they can find me there

and we'll we'll include the links and everything. Beautiful. Happy to see them.

Thank you so much.

Thank you.

Thank you for joining us on another episode of Care Beyond the Pain. The pain journey is rarely a straight line. To learn more about how to navigate it, you may visit our website, manhattanpain medicine.com, or read our book, Pain Answered, found on Amazon. Until next time.