This episode is sponsored and brought to you by Crexont. That's Crexont, carbidopa and levodopa extended-release capsules. To learn more, visit crexont.com.
Welcome to another episode of The Caring Neurologist. Today, we're diving into an often overlooked, but deeply impactful aspect of Parkinson’s disease: pain. While tremor, stiffness, and slowness frequently take center stage in both diagnosis and treatment, pain is a symptom that is rarely addressed, yet it affects more than half of people living with Parkinson’s. In this episode, Dr. Sandeep Thakkar highlights the different types of pain experienced by those with Parkinson’s, ranging from musculoskeletal discomfort and dystonia to neuropathic and central pain and explains why these symptoms are frequently missed or misdiagnosed. We’ll explore how pain can be influenced by medication timing, why it doesn't always correlate with how controlled other Parkinson’s symptoms are, and most importantly, what steps patients and their care teams can take to recognize, manage, and reduce pain so they can maintain their best possible quality of life. If you or a loved one has Parkinson’s, or if you’re a healthcare provider looking to better support your patients, this episode is essential listening. Let’s begin the conversation about pain in Parkinson’s, the symptom that nobody asks about.
00:00 Understanding dystonia and related symptoms
05:01 Identifying early Parkinson's symptoms
07:39 Managing Parkinson's symptoms and diagnosis challenges
10:14 Managing pain and medication timing
14:51 Discussing pain management in Parkinson's
17:08 Discussing GABA deficits in Parkinson's
22:53 Understanding Parkinson's pain symptoms
25:48 Managing muscle cramps in Parkinson's
27:42 Managing Musculoskeletal Pain
32:13 Struggles with foot pain and shoes
34:13 When to seek emergency help
36:34 Misconceptions about pain and Parkinson's
42:30 Managing Parkinson's with Less Narcotics
43:44 Thanking Dr. T for insights
Understanding Pain in Parkinson’s: The Symptom Nobody Asks About
When we think of Parkinson’s Disease, symptoms like tremors, stiffness, and slowness come to mind. However, as explored in this episode of The Caring Neurologist with Dr. Sandeep Takar, pain is a deeply disruptive and often overlooked element of life for many patients with Parkinson’s. Despite affecting more than half of patients, pain remains under-discussed and underdiagnosed among both patients and healthcare professionals.
The Many Faces of Pain in Parkinson’s
Pain in Parkinson’s isn’t straightforward. It presents itself in various forms including:
Musculoskeletal pain resulting from rigidity, poor posture, or repetitive strain, think sore necks, stiff shoulders, and aching joints. Many patients are initially misdiagnosed with issues like frozen shoulder or arthritis before a Parkinson’s diagnosis is considered.
Dystonic pain, characterized by involuntary muscle contractions and cramping, often appears in the feet and toes, especially at night or early morning when medication is wearing off.
Neuropathic pain features shooting, burning, or electrical sensations mimicking nerve compression or sciatica.
Central pain, which is less localized and arises from the brain’s pain processing circuits, can feel like burning, tingling, or “creepy-crawly” discomfort.
Dr. Thakkar highlights the diagnostic challenge posed by pain in Parkinson’s, as its vagueness can mimic other injuries or conditions. For some, dull, unexplained pain especially when other classic symptoms like tremor or slowness aren’t yet obvious may even be the earliest sign of Parkinson’s. This underscores the importance of a thorough history, physical examination, and sometimes, additional tests to rule out other causes of pain 04:17.
Medication Timing and Pain Fluctuations
A common thread among many patients is the fluctuation of pain with medication timing. If pain consistently worsens as the effects of Parkinson’s medication wear off (such as levodopa), this may indicate a direct connection between symptom control and pain experiences 10:28. However, Dr. Takar notes that sometimes, even when motor symptoms are well managed, pain persists or fluctuates unpredictably. Factors like exercise, hydration, types of food (especially protein, which can block medication absorption), and other medical conditions can all play a role 21:11.
Medication advancements, such as extended-release formulations and subcutaneous pumps, have improved the stability of symptom control and, for some, have reduced pain severity 21:43. In certain cases, treatments like deep brain stimulation though not aimed specifically at pain can alleviate rigidity and thus indirectly relieve discomfort 22:12.
Approaches to Pain Relief
Dr. Takar is clear: There is no one-size-fits-all, FDA-approved treatment for pain in Parkinson’s. Instead, treatment is tailored to the specific cause:
Dopamine agonists or adjusting medication timings help when pain is closely tied to “off” periods.
Medications for neuropathic pain, such as duloxetine (Cymbalta), gabapentin, or pregabalin (Lyrica), may alleviate shooting or burning nerve pain.
Botox injections are beneficial for dystonic cramps and tightness, especially in muscles of the neck, hands, and feet.
Physical therapy, stretching, acupuncture, massage, and careful exercise planning (like swimming or tai chi) can address musculoskeletal sources of pain and help prevent further complications.
Supportive lifestyle changes, like proper hydration, shoe selection, and postural adjustments, can help minimize discomfort 31:18.
Dr. Thakkar stresses the importance of not ignoring persistent or severe pain, especially new, rapidly worsening, or unexplained symptoms. Pain in the chest, jaw, or left arm should always be urgently evaluated, as it could signal a cardiac emergency, not an atypical Parkinson’s symptom 35:01.
The Takeaway: Speak Up About Pain
Perhaps the biggest insight from this episode is the need for open conversation. Patients often assume pain is “just part of aging” or “not worth mentioning,” but Dr. Thakkar encourages everyone: Don’t minimize pain bring it up with your neurologist or primary care doctor 41:13.
Pain profoundly affects quality of life, sleep, mood, and ability to stay active and social. Early and honest communication ensures pain is assessed, understood, and treated holistically so that patients can live as comfortably and vibrantly as possible with Parkinson’s.
The Caring Neurologist - Podcast Website - https://thecaringneurologist.com/
Dr. Sandeep Thakkar - LinkedIn - https://www.linkedin.com/in/sandeep-thakkar-do-798a2499/
Dr. Sandeep Thakkar - Clinic - https://ocparkinsons.com/about-mdpds/our-team/dr-thakkar/
TopHealth - https://tophealth.care/
“Disclaimer: Informational only. Not medical advice. Consult your doctor for guidance.”
[00:00:00] This episode is brought to you by Crexont. That's Crexont, Carbidopa and Levodopa, Extended Release Capsules. To learn more, visit Crexont.com. That's C-R-E-X-O-N-T dot com. If you're having chest pain, sharp stabbing pain, pain that goes to the jaw, to the left shoulder and down the arm, or if it's sharp stabbing pain that's going directly to the back, making it hard to breathe. Again, that's a 911. That's a call to the emergency room. We don't want anything to be
[00:00:29] delayed because again, that could be deadly. Hello and welcome to another episode of The Caring Neurologist. Today's episode is going to be about pain in Parkinson's, the symptom that nobody
[00:00:56] asks about. Pain is one of those symptoms in Parkinson's that we don't always have enough evidence about. We don't necessarily talk about. As a neurologist, we think about tremor, stiffness, and slowness. And we never address those non-motor symptoms to the degree that we think of related to Parkinson's, like pain. And when we deal with pain, it's obviously one of those disruptive symptoms that
[00:01:21] affects patients and their quality of life. So I'm Dr. Takara, and I'm the Caring Neurologist. And today we're going to talk about the different kinds of pain, what happens and how it affects patients with Parkinson's, and how it may relate to medication timings, and most importantly, what you can do about it. Let's dive in. Hi, Dr. T. So when we talk about pain in Parkinson's, what exactly are we talking about? Well, today's episode will again, focus predominantly on Parkinson's.
[00:01:48] We'll also talk about how other aspects of pain, what people chronically go through without Parkinson's also deal with, but pain is very common in Parkinson's. In fact, it may be affecting more than half of our patients because it's one of those unrecognized symptoms. Now I can tell you the literature and what we've been trained as movement disorders and our specialty of like learning is limited when it comes to pain. And we're really good with medication response when it comes to
[00:02:15] tremor, stiffness, and slowness, and those that are dope are responsive. However, as we know, Parkinson's disease is a bunch of, it's a cascade actually, of neurotransmitters that affect the brain and the central nervous system. And of course, the central nervous system that is part of the brain is the spine. And then the nerves that come out of the spine can affect motor symptoms and sensory symptoms. So there is musculoskeletal pain that's very common that we may see with rigidity of the
[00:02:43] muscles. It may affect certain aspects of the neck and the stoop posture. It may affect muscles that become strained in the foot with the hands. Repetitive movements may affect even achiness around joints. So that may make it harder to coordinate whether it's our shoulders, our back. And then what I come across a lot of is this frozen shoulder arthritis that patients were misdiagnosed with when they've gotten a dystonia and rigidity, but that dystonic symptoms are involuntary.
[00:03:12] They don't necessarily come with sustained muscle contractions that you see a tremor with, but it's really twisting and turning and cramping of muscles that are intermittent. And we're always in an aggravated state. And that's why it makes it hard. There's also the dystonic foot cramping and toe cramping that happens at night and people mislabel it as, oh, I must be low on my potassium or magnesium. And it could be actually part of when the medications are wearing
[00:03:37] off. And then we also have to think about the neuropathic pain, the shooting, burning, electrical sensation of pain that can come through and mimic a sciatic nerve or nerve root compression, which could be also aggravated by one's posture when it's flexed. So today's going to be really diving into so many different aspects. One of the other aspects of pain is called central pain. And it's thought to arise
[00:04:02] from the disease as well, as far as the brain, brain's pain processing circuits. It tends to be strange and hard to localize. That could be again, burning, tingling, crawly, creepily sensations. And a lot of those disruptive pain issues may not be like as troublesome as, you know, a circumstance of back pain. But it affects in like a restless leg symptom and it's uncomfortable. And rarely do we see severe
[00:04:31] abdominal pains that are kind of our random shooting pains that's outside of constipation. But there's again, so many different senses that patients with Parkinson's go through. And it may not be as obvious to the manifestations of again, a normal routine visit that we want to think about. Dr. Takar, and these sensations that you mentioned, these symptoms would indicate a Parkinson's diagnosis or they're just simply something that can't happen when you have Parkinson's disease?
[00:05:00] Yeah. You know, I'll tell you one of the hardest things to diagnose when it comes to pain, because it can be vague, it can mimic some other form of injury. And I have many patients who've come into my clinic. And I'm talking about maybe like a consultation with just about 5% or less, but it is like these shoulder pains and like it's a frozen shoulder issue. And patients have either even gone for surgery before they've even been diagnosed with Parkinson's, but that rigidity, that muscle
[00:05:29] tightness, that dystonia, it looks like a frozen shoulder because they're not swinging their arms. It looks like it was like from some repetitive injury. When you do imaging of the shoulder, they may show arthritis, but it doesn't say like, oh, there's an obvious tendon tear or a clavicle injury. And there's always what we call degenerative joint disease or DJD that someone may have that just appears to be pure arthritis and it needs to be cleaned up. However, many patients have had,
[00:05:55] you know, other aspects of shoulder pain, and then they may be easily fixed with a tiny little procedure, but many patients with Parkinson's have this kind of dull aching pain that's unexplained and they can't sleep on that side. And so I have seen it where it can present that way without the obvious tremor, stiffness, and slowness, but maybe an astute physical therapist may notice, hey, you know what? I do actually see a little bit of tremor. Hey, you know, you're not really swinging your arm or
[00:06:23] you're shuffling your feet as well. And then it kind of manifests that you got to see a neurologist. So we've seen it, that it's not as obvious early on, but maybe later in the disease state, it could be presenting that maybe as a neurologist, you can say, okay, I think this is purely Parkinson's related and we need to jump on treatment. And so how can someone tell whether the pain may be actually related to Parkinson's? Oh, and that's what's hard. I mean, this is why we really wanted
[00:06:51] to do this episode because pain can be common in Parkinson's, but it is underwhelming to diagnose and it's very under-recognized. So the way we look at it, again, most of the pain that I see in Parkinson's is musculoskeletal type of pain, musculoskeletal, right? Muscle and skeleton bones. So it usually can be associated with the rigidity. A lot of our patients have the stoop posture of
[00:07:16] their neck. They have a reduced movement of their muscles of the neck. So the neck and the muscles of the back may be already in a strained state. So it's easy to strain a muscle that's already in a poor posture. And it just takes, you know, the tip of the iceberg to kind of crack or think about the minute type of maneuver where you're picking up something or carrying something against your head
[00:07:40] and neck, and then you get some severe achiness, but it can be usually misdiagnosed as just a strain and that chronic achiness and stiffness that's there. Sometimes it just takes longer to recover, but it's commonly seen in certain areas of like the shoulder girdle. And it may not be as bad in the morning, or it could be very bad in the morning. And that's what makes it so difficult because there's different presentations of pain for patients who have rigidity. Now, if you have
[00:08:08] what we call dystonic pain, it's kind of this involuntary succinct muscle contractions, like twisting and cramping of muscles, that could also be like toe cramping, toe curling at night, early morning hours. And that's when we're not taking our medications. And then we see that when we take our meds during the daytime, we don't get that foot cramping and curling, but it's usually happening like in those early morning hours. So we take medicines at night, maybe it could last into
[00:08:33] early morning hours and it could reduce those cramping issues. But you know, how many people have done certain exercises or they're not well hydrated and then they cramp up and they mistake it as not, you know, not, not a due to a neurological disease, but just kind of common low minerals. And there are so many situations again, where, uh, the pain itself, we think it's Parkinson's
[00:08:59] possibly because they got tingling in their feet at night when they're laying down and they, we call it restless leg, but maybe it could be mistook as burning or electrical pain. And so we see a lot of kind of vague symptoms that don't let us know that it is Parkinson's or not. But again, if I look at someone's back and image it, according with an x-ray CT or MRI, there's not some obvious like,
[00:09:24] oh yeah, this is due to a nerve root compression. And so we have to get a, uh, uh, what's called an EMG nerve conduction test. And those tests can be very vague and they're not very specific to rule out whether it's definitely from the back or it's definitely from the small fiber nerves, uh, coming from the back. And that's what makes it very hard is that these varied symptoms really require history taking. So when a patient comes in and like they've missed their dose of medications and this even
[00:09:53] more exacerbating pain, then potentially we can say, ah, this could be part of your Parkinson's. But then I have some patients have like a burning sensation in their back or shoulder blades. Um, they can get symptoms on that same side of the body, but it's kind of hard to say where it is like localizing from. But again, these situations could be exacerbated based on when someone's late on their meds or if they're consistent with the medications, but we haven't
[00:10:19] let the medicine peak properly. They can have a lot of this still achy soreness and, and, uh, these sensations again, that are, uh, like uncomfortable. Like it makes people want to crawl out of their skin can also be there as well. So that's why it's a lot of misdirections of trying to diagnose it properly. And so you have mentioned that these symptoms can appear while the medication's wearing off,
[00:10:44] right? So can Parkinson's pain actually fluctuate with the medication cycle? So is it because people don't take their, their medicines that it happens or it's just like something that happens in between? Support for this podcast comes from Crexont Carbidopa and Levodopa extended release capsules. If you'd like to learn more about Crexont, ask your healthcare provider or visit crexont.com
[00:11:13] where you'll find full product information, including the prescribing information. To learn more, visit crexont.com. That's C-R-E-X-O-N-T.com. It's, it's hard. It's hard to say if it's only because of the timing of medicines, because even if you take medications, maybe it doesn't absorb as well, you can still have breakthrough pain,
[00:11:39] but that type of pain again has to be pretty consistent. And it's probably one of the strongest clues that we have who's already been diagnosed that if they're taking their Levodopa therapy and wears off, then like in 30 minutes or an hour, um, after they've taken their medicine, that pain is gone. Or if within minutes or 30 minutes before they're due for the next dose, it's coming back, then we can say it's probably related to that timing. Now I've had patients again,
[00:12:08] when they're doing certain activities that it could be good for their pain, right? Like they're moving more, they're releasing good dopamine, good serotonin, good norepinephrine, and that can help maybe calm down the degree of pain. But then there's those that may be exercising too much and maybe they're aggravating areas of muscles that have already been tight. And then that can aggravate those pain centers, pain areas. And then it, we may not know it's totally about just the medication.
[00:12:37] However, there are other medicines that are more long lasting. And so we don't really get the time fluctuation related to, for instance, like just Levodopa. And if there's a dopamine agnes therapy, that's long lasting. And it's really for this restless leg or uncomfortable cramping and toe curling that happens that are dystonia, sometimes you can miss it with those extended release dopamine meds. Now, one thing I do want to comment on, which is a new caveat in the world of Parkinson's is if you
[00:13:06] are taking Levodopa therapy, any Levodopa formulation, there are rare, rare risks of having poor absorption of vitamin B6. And in that context, patients could have neuropathy. And so there could be a concern of nerve pain. And then at the same time, we could be taking too much vitamin B6, especially since this is now on all the warning labels for medication of Parkinson's, that if you
[00:13:34] take too much B6, you can create neuropathy. So there isn't like, you know, you're darned if you're doing, you're darned if you don't type of phenomenon. We should do a good job in the neurology world of even checking blood work and labs and doing proper workout. And are there any particular kinds of pain that you hear most about from your patients? Yeah, I think that's a, that's a good question. So a good percentage of pain that comes out when I
[00:13:59] think it's related to Parkinson's could be this back and shoulder issues. And again, some of these patients that have back pain, it's not that they've had it for like, if they've already had scoliosis, maybe can aggregate certain angles on that side, when they've got to certain degrees of scoliosis and curvature. I see a lot more of this shoulder girdle pain, and it's usually on the side
[00:14:25] of symptoms where they're stiffer and slower, if they're having tremors. And as we've talked about in other episodes, there's that a kinetic rigid type of Parkinson's that is not the typical tremor type, but the stiff and slow type. And that form of Parkinson's usually comes with a lot of discomfort and pain around the shoulder and neck. I see many patients who, you know, they don't complain of neck pain, but they're kind of very stoic in their posture. But when they're trying to
[00:14:49] turn and trying to move or they try to drive, they can aggravate the muscle. So some of those pain situations don't necessarily come about all the time. They'll come in situations. That's why, again, it could be hard to diagnose with Parkinson's. The biggest aspect of the day when pain is the worst is usually, again, in the calf, in the foot, in the hamstring and the leg muscles at night. Those are
[00:15:15] pain issues that wake people up from sleep and then they're sore and they feel like they got this charley horse and they've even strained the muscles that they're sore for days. So I've seen that quite often. And I really do recommend that patients need to time. I'll write these items down so we know the timing in relation to maybe medications or if it's related to certain foods or sweets, because a
[00:15:39] lot of people who may even drink wine or alcohol can get in a dehydrated state. If you're having a lot of sugars, then that itself can irritate muscles and nerves and that can precipitate a higher risk of developing even more cramping. I was just going to say that if it's something that is happening often, then it might be good to start observing when these symptoms appear. And if there's like that common thread, then you start understanding what's happening, right? Definitely. And again,
[00:16:05] you should bring this up to your neurologist. I've had many patients who've never wanted to bring it up because they don't think it's related to their Parkinson's. One other caveat is, again, always talk to your doctor about any source of pain and they can help differentiate what it could be, what workup needs to be. One thing in Parkinson's that I can tell you that should not be associated with pain in Parkinson's is chest pain, uh, you know, sharp stabbing, shooting pain, or any pain that goes to the left shoulder and down the arm. You always want to think of like common things like
[00:16:34] heart attack. You don't typically get headaches with Parkinson's unless it's pain from taking a medication and then you feel lightheaded or dizzy, or you get headaches from the actual levodopa therapy. Sometimes those things can be again, timely due to medicines and that could happen 30 minutes to an hour as the medication is peaking. So severe headaches, the worst headache of your life that you just experienced out of, out of the blue or chest pain. Again, that's a 911. That's a,
[00:17:03] you know, you call emergency room. That's something you don't necessarily should not see with Parkinson's. It's so important that you mentioned that because frozen shoulder and pins and needles and all of these things are pretty common. So I can see how it's hard to understand what's triggering it, but it's so important to know that anything chest related might be something serious. So it's never useless to just go check it out. And if it's nothing, then great. Right. True.
[00:17:32] And Dr. Takara, what should someone do if they're experiencing pain, but their Parkinson's symptoms otherwise seem well controlled? Yeah. Pain, pain can exist even if someone's tremor, stiffness and slowness is well managed. Motor control and pain do not always move together. Pain is one of those most, again, under treated under, I recognize symptoms of Parkinson's. I kind of put it in the same category as constipation or sleep disturbances, fatigue.
[00:18:01] It doesn't have to correlate with how someone looks. And when you take levodopa, it may help most of those tremor stiffness and slowness coordinating issues. However, it may not be a pure levodopa responsive therapy or dopamine responsive therapy. It could be, again, due to other neurotransmitters that are going on in the nervous system. We do see a lot of GABA fiber deficits in Parkinson's
[00:18:26] and degeneration GABA, which is a neurotransmitter associated with pain. And so when you've lost those connections and there may be a higher rate of pain and discomfort. So we do, you know, again, highly recommend that patients talk with the neurologist, that we talk and also document very detailed what time did the onset of pain start? How did it ramp up? How did it wean off?
[00:18:54] Was it associated when, you know, you ate? Was it associated with certain fluids? Was it associated with other medications that you're taking? I think this type of documentation is, again, very key. And you have to bring this in to your primary care doctor or even your neurologist. What I also have seen, it could be related to certain activities. Again, some people may experience certain fatigue of muscles after doing certain exercise. They don't realize what can
[00:19:24] happen or feel like it's a delayed response after like rock steady boxing, or it could be, again, after certain foods and how you're digesting. Because I've seen patients who, again, are eating a very acidic diet. They get reflux issues because of their constipation and they're backed up. They have higher rates of hiatal hernia. So it could be, again, other associated symptoms of Parkinson's, and it could be, again, related to even food and how you're digesting certain foods. So really,
[00:19:52] you don't want to assume everything is Parkinson's, but we want to get it worked up. Some people may have arthritis. They may already have a rotator cuff injury. They may have had a history of vitamin B12 deficiency if they're vegetarian. So these are the type of things that we still want to work up, make sure we're not missing anything. So we also have, you know, the primary care doctor refer out to orthopedists. And if they haven't, then as a neurologist, then we'll refer out to a hand
[00:20:18] specialist or back specialist. And we definitely want to get physical therapy in as much as possible because we don't want to miss that. So we utilize that as part of the therapy as well. But when people are considering such issues, again, our thought process is that there's an obvious, there's pain component and how could it be related to Parkinson's based on their symptoms of tremor being controlled? Like it's hard to judge that. I mean, again, a lot of us in the neurology world,
[00:20:48] we miss the diagnosis or the issues of pain associated with Parkinson's because someone does look good, but it could be also on the features of the meds starting to wear off and they haven't totally worn off and patients feel uncomfortable in those moments. The other unique thing about it is when the meds peaking, there's something called a diphasic dyskinesia or diphasic dystonia. And so what happens is usually the medicine's building up, building up, and then patients could start having
[00:21:17] contractions of muscles in a negative way. And the muscles are supposed to be loose, but they're twisting and turning because the meds kicking in. And we see that that can cause pain too. And it's very much associated with that dyskinetic state when someone's moving well and not so stiff and not so slow, but you may not see it so obvious in the limbs, but it may be the trunks moving and causing a lot of twisting of the back and neck. So the idea is to keep the medication stable at a certain level, always active?
[00:21:45] Ideally, ideally, unfortunately, the medicines don't read the book and they don't kick in the way we want. They don't sustain smoothly and drop off in such a way. They have this variability in a lot of our levodopa therapies. Again, it absorbs all of a sudden and then it drops off and then there's a delayed on when it's like it hasn't kicked in and then it kicks in way later. So we see some variability in our oral tablets, which is why a lot of the extended release formulations that are newer
[00:22:11] have a better job of absorbing at the small intestine. One of the newest ones that we have called Crexont C-R-E-X-O-N-T does a better job of sustaining and absorbing better, but it could still be blocked by protein. So we do have to be mindful of telling patients that when you have a protein drink, protein shake, you know, protein bar or protein rich foods, do you have more pain? Because maybe it's blocking levodopa and then maybe the pain is more associated when you're eating certain types of
[00:22:41] foods. So we've seen with the older extended release formulations that the pain could be worse or the absorption of the medication isn't as good. So therefore maybe tremors and stiffness could be irregular too. But as we moved over to more smoother therapies, for instance, like the subcutaneous pumps that exist, then we also are seeing less severity of pain if it was dopamine related. Some patients
[00:23:09] may go for something like deep brain stimulation and that may help a lot of their muscle rigidity and then there's less pain overall. And I've seen that happen quite a bit in circumstances for very advanced Parkinson's. But deep brain stimulation, it's a Parkinson's treatment or it's a pain treatment? No, deep brain stimulation is when we put the electrodes in the brain and we are stimulating an area called the septalamic nucleus or the globus pallidus. And that's for tremor stiffness and slow
[00:23:39] for those patients that are responsive to levodopa. And one of our earlier episodes, I can't remember if it's episode five or six, but we did a full episode on deep brain stimulation. So that's something I would highly recommend for many of you who haven't seen that episode. It'd be great to understand what deep brain stimulation is about. And Dr. Takara, once we identify the pain, you know, we've been talking about all these pain related sensations that you can have.
[00:24:06] How do you actually treat it? So it's a good question because there is no FDA approved therapy for pain related Parkinson's. We kind of have to figure out what that pain is. So for instance, when a patient's laying down, if they're like about to go to sleep or if they're watching TV for extended periods or at the movies, patients can get this restless leg feeling and that restless leg feeling in their legs, it could be actually called restless limb syndrome, but it can feel in their arms
[00:24:33] their legs, this creepy crawly sensation. It could be kind of like electrical shock or jolt that they can get in their limbs too. But it's this feeling that's uncomfortable. It could be kind of churning of the muscles as well. And people have to kind of shake it off and move their limbs to get more comfortable and to avoid that pain. But we do see that that's dopamine responsive. So then we can, apply certain medications, maybe send dopamine agnes. And that's been very helpful
[00:24:59] to go after that type of pain. If it's pain when it's due to a medication wearing off, well, you know, sometimes it's hard to like, it may not be just a dopamine type of therapy. We've seen a mantidine and an extended release formulation of it called gold recovery be very helpful for dyskinesias. But many patients who are twisting and turning a lot, that chronic movement causes a lot of chronic pain. And I've had many patients who have severe shoulder, arm or neck pain and twisting of
[00:25:28] the back as well because of the dyskinesias that when we add on a mantidine, that may also help patients do really well. And again, as I commented earlier, it may not be dopamine related, maybe serotonergic or norepinephrine based or GABA affected. So we have many patients take SSRIs or SNRIs, which are from the world of serotonin or norepinephrine. And they're commonly used for
[00:25:53] patients who have depression and anxiety. But one of the medicines that exists that's FDA approved for neuropathic pain that may also help headaches and reduce such symptoms of neuropathy could be a brand that's called duloxetine or Cymbalta as the trade name. And that has been used at low doses to maybe help acquiesce the pain that someone's going through. It doesn't necessarily work for everybody, but you really kind of figure out that it's for neuropathic type of pain.
[00:26:21] In the past, we were using certain types of headache pain medicines, certain antipileptics, and those type of medicines had at a higher doses typically cause dizziness like headness. So you have to be really careful and be particular about the use of when you want to use it. And there's also something called pregabalin. Also, a trade name is Lyrica and gabapentin as well,
[00:26:48] which is very useful for patients who have chronic back pain and nerve damage. So that kind of helps calm down the severity of such pains. But we have seen at maybe low doses, it could be beneficial for some of our PD patients. I wouldn't say that these are the medicines that I would like at higher doses because it can make the brain feel foggy, it can make someone feel sleepy and tired and puts them at a fall where so we really want to identify the specific cause. Many of my patients who have the
[00:27:15] toe curling and cramping the legs, we obviously tell them, you know, you got to get a little bit more magnesium and potassium, whether that's through our natural foods and diet. Also keep extremely well hydrated. But if it's this dystonic cramping pain, a lot of my Parkinson's patients get Botox and we use Xeomin and we use other forms of Botulinum therapy, and we inject into muscles that are going to get into a cramped state. And it really relaxes the muscle and puts patients in a more flexible state and
[00:27:41] not as rigid to then develop the cramping. Those musculoskeletal pains or dystonic pains also if it's of the neck, we use a little bit of Botox to help relax the neck to improve that flexibility. But if it is purely musculoskeletal, we got to get them into physical therapy, which is extremely important to really focus on posture. And then, you know, if there's really some asymmetry in the spinal curvature,
[00:28:05] also having chiropractic manipulation, we try to also incorporate acupuncture. And that's also a unique mindset to go after certain aspects of inflammation. Now we could use certain NSAIDs, we could use Tylenol, we could use certain, again, anti-inflammatory patches like lidocaine as well, if we need to. And that needs to be, again, judicious. Like we don't want to just have everyone
[00:28:31] taking ibuprofen and Tylenol on a regular basis. Really got to be careful because it can cause irritation to other organs. And we don't want someone taking too much aspirin or, again, ibuprofen because it can irritate the gut lining and affect the kidneys potentially. And having said all that, are there any lifestyle changes or adjustments or things that people can do at
[00:28:54] home that may help? Yeah. If the normal stretching aspects, if the hydration, if the diet, you know, if these things are not helping, then we definitely also send patients to pain specialists to really work on like localized injections. But at the same time, you know, after we've done our workup and there's no bulging disc that requires someone to go to an orthopedist or neurosurgeon for like a
[00:29:22] slipped disc, then we really tried to get the strategies of, again, common sense things to reduce the musculoskeletal pain. And as I commented about, like in physical therapy, it's about executing it, but not overdoing. You don't want to also aggravate muscles that are irritated. Sometimes it is the normal rice therapy, right? The rest, the icing, the compression, uh, the elevation. I mean, sometimes you kind of have to do those types of things. If it's your foot, uh, if it's your arm,
[00:29:49] be mindful, like if you're getting tingling down the arm, could it be when the medicine is wearing off or is it because we're always sitting on our elbow or we're typing in a certain position that's aggravating these nerves? And so again, maybe you have a compression sleeve. Maybe you change your posture. You work on, again, strengthening muscles for, again, sitting more upright. Being consistent with the timing of the medications is extremely important because it is hard and it is very hard to take your medicines
[00:30:14] on time. So I applaud those that are doing that and doing a job about, about that for their Parkinson's. But if you're not being particular, then you just don't realize that these waxing and waning symptoms of pain could be from the medicines being irregular. I want people to exercise regularly, uh, start exercising before you get chronic back issues and, you know, muscle like degeneration. So it's important to start your
[00:30:40] normal walking routines, get into cycling, get into Tai Chi, work on dancing. Again, these are all good for core, especially Pilates. Many of my patients who have a lot of arthritis, they're doing boxing and they love it, but then they get soreness, they get aches in the wrist. So, and their elbows. So you don't want to also aggravate something if it's going to, uh, bother an underlying comorbidity or the health issue. So swimming may be important. If you have a lot of knee issues, again, swimming may be again,
[00:31:08] a key aspect, or maybe you're cycling against, not against any resistance, right? So some of our patients have chronic back issues and they're always like hitting the treadmill, then they're aggravating their back, they're aggravating their knee. These aren't the type of things that you want to continue to do to, um, push through. Like this isn't what's necessary in Parkinson's. You want to reduce the inflammation because inflammation I think is pretty toxic on, on, on the body and the nervous system. So the brain still senses all that pain and inflammation, then it doesn't get to
[00:31:36] utilize its resources where it needs to for the coordination and pain will aggravate tremors too. So we want to cut, go after the inflammation, you use heat packs, cool packs, alternate appropriate warm, uh, showers potentially, or heating pads on the muscles, right? And then cool packs on the joints. And that usually helps a lot of our patients. You may again, need to stretch multiple times per day,
[00:32:05] getting massages. That's extremely important. Gentle massages can be good using a foam roller in certain areas of the body could also relieve the muscle tension and tightness and knots that we get. So we really want to put ourselves in a way from the threshold of getting to our cramp. And again, soaking our feet in certain water that is warm, potentially, you know, saltwater bath could be also very good for the joints and muscles, uh, being mindful about supportive chairs,
[00:32:34] having good pillows, having a good bed that can adjust for your needs. I think those are extremely important too. And then shoes, shoes are probably one of the most, uh, under talked about things in Parkinson's where you need to get a good, uh, support for either the heel or we need it actually, um, at the curvature of our foot so that the arch is appropriately supported because if we are walking
[00:33:02] and causing strain and that kind of leads to other secondary pains as well. So hopefully, uh, that's, uh, I know it sounds exhaustive, but there's a lot of things you can do at home to reduce severity of pain. It's good that you mentioned shoes because I think they're just underestimated. A lot of people buy shoes because they like them, but can you stand in those shoes for a long time? Can you walk? And that actually affects directly your skeletal muscular. Yeah. Those, those aspects, those aspects of pain
[00:33:31] that could be aggravated again by your foot orthotics are a big deal. And I know when I was trying to get back in shape and run and I got like these cool looking shoes and, you know, they were actually reflective shoes. Cause if I went running at night or walking at night, you know, cars could probably see me, but at the same time, they didn't have the best arch support. And there's these trails that are close to our house. And I got these trail shoes and you know, I'm walking and running on some certain rocks
[00:33:59] and pebbles and dirt, but it didn't have a good, good cushion. So I was aggravating a lot of my foot pain. And I couldn't get back into a routine of exercise and I just kept hitting a wall. So, you know, as much as we're trying to stay in shape, uh, have the right tools. Also what works for other people is not necessarily what works for you. So just buying what people recommend without trying them on and really seeing if that's the best. Yeah. And you think about big cushions, right? Like there's these
[00:34:26] Hoka shoes that are out there, um, certain new balance shoes. And again, some of these shoes, again, are dramatically like they really reduce a lot of pain, but for a lot of our patients who have Parkinson's, you don't necessarily want to have the very thick soles either because you can't feel the ground as well. So for a lot of our patients, you got to really find the right shoe. I really recommend a lot of our Parkinson's patients going to a special shoe store that where patients are being
[00:34:54] watched as they're walking and what's appropriate for their stride height and length. Some people may have some, um, altered, uh, uh, asymmetry in their, in their, in their legs or their pelvic tilt may be off. And so again, going to a store that someone does like a little bit more of a gait analysis, it could be very helpful for getting the right shoes. But again, the thicker the sole does not guarantee it's going to be safe walking. So I always want people to be mindful of that.
[00:35:21] And is there a point where pain shouldn't make someone call their doctor rather than simply trying to manage it themselves? Yeah. I think as we kind of had, had that discussion earlier, and I kind of wanted to make sure we emphasize this a couple of times, you know, is there something's new and rapidly worsening, worsening pain that, that definitely requires attention, chest pain. Again, I do never, uh, I never want anyone to delay the workup for that. If you're having a chest pain,
[00:35:50] a sharp stabbing pain, pain that goes to the jaw, to the left shoulder and down the arm, or if it's sharp stabbing pain, that's going directly to the back, uh, making it hard to breathe again, cause that's a nine one one. That's a call to the emergency room. We don't want anything to be delayed. Cause again, that could be deadly. However, um, anything that's also severe and unexplained Parkinson's doesn't come with severe unexplained symptoms. If it's repeating in a chronic
[00:36:17] fashion is mild, then it becomes a little bit more moderate pain that's fluctuating again. If it's response to pills of Parkinson's, then maybe again, it's more Parkinson's related, but it shouldn't be so severe and unexplained. Now pain could be associated with falls. And, uh, if you're in a blood dinner, again, I'm going to be very mindful of that, that if you have a bleed anywhere, the blood can expand. So if you have a headache after a fall,
[00:36:45] that could be serious. You want to get into the emergency room to get a head CT at the least. Um, if you are in a blood thin, you've fallen, you could bleed anywhere in the body. And so again, some organ failure could occur. We don't want anything to, um, be delayed in diagnosis. Many patients who are older are at risk for heart attacks and, and strokes. And so they've been told to be on an aspirin. So maybe you get a GI bleed. And so if you get very deep aching pains in the gut,
[00:37:14] uh, and it's hurting in the stomach, that again, unrelated to constipation, I would highly recommend that getting worked up quickly. And, and so again, as we said earlier, shortness of breath, chest pain, uh, severe back pain, that's maybe incorporating weakness that should, that should be taken seriously and probably is not Parkinson's. And would you say that just severe pain in general, maybe get that checked? Yeah, I would say, especially if it's like out of the blue.
[00:37:42] And what is the biggest misconception you wish people with Parkinson's understood about pain? Yeah. I feel like there's so many misconceptions about pain. Sometimes I'm going to tell you that neurologists, we have a misconception that, oh, that pain cannot be Parkinson's really, but I think we have to do our due diligence and workup and make sure that we're encouraging the patient to get the right workup accordingly. But as far as a pain mismanagement or, um, uh,
[00:38:11] a misbelief potentially that it's, oh, it just comes with the package of having Parkinson's, or maybe it's not worth even bringing up, or it's just my age, or it can't be Parkinson's. Like those are many different misbeliefs. I just think that again, bring it up to the doctor. I mean, what's the worst that can happen. Um, if you, if the, if the doctor has to like, just think it through and just kind of go through the list of issues that could be, I mean, it just takes a
[00:38:38] little bit more of time on my end to this talk it through. But I think that it gives me also clues that, Hey, something else is going on. As far as a patient, you know, you never want to minimize your symptoms. You want to always bring it up as to what, what, uh, what's bothering you because you may not realize that that pain that you're having could be affecting your other aspects of your life. For instance, it could be affecting sleep. And then you're saying, Oh yeah, but I have
[00:39:06] a lot of sleep issues. And then, so me as a neurologist, I may help the sleep if I got, went after the pain or vice versa is if I got rid of the pain issues, then patients are sleeping better and everything just works better when you're not in pain. And I do believe that many neurological issues of pain as it's backing up the nervous system, the brain doesn't think well, doesn't
[00:39:31] process well. And I think it really creates, uh, this mental clouding more than we realize in that inflammation process is really toxic for the, for the brain. Yes. Pain can really affect, um, the quality of life, right? So important to talk it out. And why guess? If your neurologist can help you understand where it's coming from and if you need to direct the patient to another specialist and you can do that.
[00:39:58] Yeah. I had a scenario. I was with the patient and the patient was talking about this. It was talking about some kind of, uh, discomfort that he's been having. He's like, I think it's, I think it's food related. And I'm like, okay, well, he's like, yeah, I've been having a lot of indigestion. So he's been taking a lot of pain medicine to cover it up. Well, while he was in my office, he started sweating and he's like, yeah, it's just that pain is coming
[00:40:24] back. And, and he's like, yeah, it's just, it's just always like up here. And it kind of feels like it's like on the upper aspect of my stomach and yeah, it's gotta be like, I just ate lunch. And so anyway, I looked at him and I'm like, this, this, this doesn't look right. You're looking weak. You're looking kind of pale. And he's like, yeah, it's just been happening in the last week. Ends up check. I check his blood pressure. I'm like, this doesn't look, this looks serious. This is, I think you're having a heart attack. He's literally having a heart attack in my office and
[00:40:52] I'm calling 911. And we had the paramedics in there within five minutes and was able to take him to the hospital. He got a stent. And again, it was just like, oh, it's just, it was mild issues over the last week. And I didn't really think of it. I thought it was related to my food and stuff like that. And again, you never want anything to build up. Talk to not even just your doctor. I mean, talk to your family, just make sure that someone else is getting a good sense of what's going on with
[00:41:18] you. Because I do think that by the time you have a doctor's appointment, that could be weeks or months out. I mean, we could have missed something that could have been serious. That's really eyeopening because I think that so many people think that a heart attack is something sudden. But in this case, there were signs previous to the heart attack, but he just never stopped to think that it might be his heart. So important to, you know, it's hard because there's heartburn,
[00:41:45] right? So it can be confusing heartburn, right? And you know, many people deal with acid reflux. I mean, you can eat spicy foods, spicy foods, and one time it bothers you, and another time it doesn't, another time it does. So then you get this kind of, you know, symptoms that are again vague. And then if something is serious and it's building up, it can also have that same pathway because the nerves are sensing it. So they can still reactivate or trigger that same path, pathway of pain. So we just never want to
[00:42:12] take anything that's sudden and out of the blue as light, you know? And Dr. Takar, we've reached the end of our episode, but what would you say to someone listening who has been quietly living with pain and hasn't yet brought it up with their neurologist? You've got to voice your opinions. Never be quiet about any symptoms that you're dealing with, especially with pain. We want to make sure that a big part of this podcast series is about
[00:42:40] education. And we have numerous episodes about different aspects of education. And one thing I want to always promote is you got to feel comfortable talking with your neurologist, talking with your primary care doctor, take notes, be your own advocate. And you don't want to just accept symptoms, especially not pain, because pain is one of those things that create quality of life to be diminished. We see patients who suffer from chronic pain. They have a higher rates of depression and
[00:43:07] anxiety. We don't want people missing out on social activities and what makes them so vibrant and energetic. If they're sociable, we want people to maintain that social light experience, the, you know, sociability that is, you know, good for the brain and for the nervous system. We want people to maintain a good quality of life when it comes to the exercise routines, because pain will again,
[00:43:32] limit what you can become and how well you could be in a general health standpoint. So don't accept the pain. Pain is definitely noteworthy of discussing. There are many ways to approach it. And again, as we are seeing the old school world of narcotics that have been putting a black mark on talking about pain and how to manage it, you know, we don't use that much narcotics in the Parkinson's world,
[00:43:58] and it creates a lot of constipation and mental dulling. So we've created, you know, networks with our pain specialists and a lot of our primary care doctors and anesthesiologists who have been a lot more gentle in how they use therapies of medicine, but we want to also incorporate early treatment of therapy so that stretching, the strength training, the certain muscle building, these type of things
[00:44:25] will help prevent it from aggravating and becoming a situation that we can't control over time. So, and maybe we can jump on this way sooner, right? So maybe we could use, you know, our orthopedic friends or neurosurgeons to incorporate maybe a mild procedure if we need to, instead of something later on that we haven't addressed that requires a major fusion surgery.
[00:44:51] So I always think that early adoption of managing care is probably the best mindset that we should have. Thank you, Dr. T, for everything that you've shared with us today. I hope this helps many people who are dealing with this situation and really don't know how to approach it. Pain can sometimes become something people simply learn to live with, but it doesn't have to be that way. If you're living with Parkinson's
[00:45:17] and experiencing pain, one of the most important things you can do is tell your care team exactly what you're experiencing. Understanding the type and pattern of your pain is the first step toward finding the right approach. Thank you for joining us for another episode of The Caring Neurologist. If this conversation helped you understand something you've been experiencing, share it with someone who may benefit from hearing it.
[00:45:43] This is The Caring Neurologist, where compassion, clarity, and hope come first. We'll see you next time.

