Pain and Fatigue in Parkinson Disease - 2019 Parkinson Educational Symposium

all right well good afternoon everyone as you heard my name is Christopher Hess I'm a movement disorders neurologist here at the University of Florida and our topic over the course of the next 40 minutes is pain and fatigue in Parkinson's disease and I chose this topic because I think this is something that we as movement disorders specialists continue despite our best efforts to not do a great job of addressing and so what I hope to do today is arm you with the information and the background that you need to go into your visits whether it's with us or other providers with as much of an understanding of the lay of the land and what's required what type of workup needs to be done and how to approach pain and fatigue in Parkinson's disease because it can be extremely challenging to make headway so this is the structure of the pain component I'm going to spend most of the talk on the pain component because there's a lot more information to go over but afterwards we'll talk about corollaries in fatigue and hopefully we'll be able to get through everything and get everyone to lunch on time I think we may have a slide oh okay we got it back okay so starting with pain so James Parkinson in 1817 provided the first description of Parkinson's disease based on three patients that he saw on three patients that he observed out in the street and he was remarkably accurate in describing all of the features of Parkinson's disease and he actually described pain as a feature of Parkinson's disease in the initial description so we have known that pain is a part of Parkinson's disease since the very first description of the disease and most of the major papers early on in the first hundred years after that recognized it as well the prevalence of pain in patients with Parkinson's disease is very high so it's estimated between forty to eighty five percent of patients the the prevalence tends to go up the longer people have had Parkinson's disease so when you think about the the fact that we've known about this from the very beginning of the description of Parkinson's disease and so many patients have it why is it that we overlook it as a symptom of the disease to such a degree that we do because just by a show of hands how many people in the audience experience pain as part of their Parkinson's symptoms so a good number of people and also how many patients experience fatigue as part of their symptoms a good number of people as well so in being overlooked at least initially pain and fatigue had good company so for quite a long time in Parkinson's disease research we focused on the motor symptoms of the disease these are the features that everybody associates with Parkinson's disease you're stiff you're slow your movements are smaller these things are the characteristics of the disease but despite that fact the non-motor symptoms of the disease for many patients can actually be more disabling than the motor symptoms and so this list that I have up on the screen of all the non-motor symptoms of the disease also were neglected for a long portion of the period that we've been studying Parkinson's disease not just go through them briefly individually cognitive impairment has over the course of the past ten or fifteen years been really there's been increased the amount of research that we're doing with regard to that is definitely a part of the disease as well as eventual Parkinson's disease dementia in some patients depression and anxiety is very prevalent in patients with Parkinson's disease some of it is due to dealing with the symptoms of the disease and some of it is just due to the disease itself has nothing to do with the actual symptoms that it causes sleep disturbances is a well-known part of Parkinson's disease now so some of you may have REM sleep behavior disorder where you act out your dreams at night many of you probably have disordered sleep difficulty staying asleep difficulty falling asleep and not feeling refreshed in the morning so that's an important part of the disease as well gastrointestinal abnormalities primarily slow transit constipation we've gotten much better at talking about this so you going to see your movement disorders neurologist for the most part all these things neurological sexual dysfunction orthostatic hypotension or getting dizzy when you stand visual and sensory disturbances sometimes patients who are on higher doses of cinnamon who've had Parkinson's disease for a while can develop visual illusions or a sense of presence of someone and being in the house with you and patients can develop apathy or difficulty enjoying the things that you normally would enjoy and caring about things in the same way that you used to so we do a pretty good job of asking you about all these things every time that you come in we don't do a good job of talking about pain and fatigue and if you ask about it very often if we have five minutes left over we've only got a little bit of time to devote to it and so despite the fact that we've not done a great job of addressing this both in research and clinically it's really important that we do so and so why is it that it's so difficult to address well one thing is pain is not a simple sensation the way that temperature or vibration or touches is a complex perceptual experience everybody experiences pain differently there are emotional components of pain there are motivational components that can modulate pain and cognitive come opponents paint can be different in people based on their understanding of the situation pain can be subjective so what can be painful to one person just based purely on the physiology of the signal to another person might not be interpreted as pain so you can imagine how difficult that is to study in groups of hundreds or thousands of people from the clinical standpoint many patients have more than one kind of pain so if you're coming to your your visit whether you're moving to sort of specialist and you say I have pain you could be talking about a huge amount of a variety of different things all going on at the same time and we could spend your entire visit and probably double that just talking about the pain and never get to all the other aspects that Parkinson's touches in your life so patients with Parkinson's disease despite this complexity may yet other also have other medical problems that are contributing to their pain so multiple things are going on at one time most of the patients in the age group that develop Parkinson's disease have pain anyway 30% of patients in the age group that most of you are already have pain for other reasons who do not have Parkinson's disease and finally the studies that have been done to date for all of the reasons that we just talked about have been relatively poor quality and have shown variable results with regard to associations to motor symptoms it's depended upon the study with regard to Association of the non-motor symptoms it's also dependent upon the study so there's a lot of variability there and it doesn't provide us with a lot of guidance about what to do despite the fact that we don't do a good job at this it's extremely important that we continue to try to get better because it's so prevalent we talked about the prevalence can be up to 75 80 % of patients it can be a dramatic factor in people's decreased quality of life in Parkinson's disease in some patients it can be the number-one predominant symptom that you're dealing with in some patients it can be the presenting symptom that's the very first thing that your experience in Parkinson's disease and it can be associated with depression and apathy as well so it's hugely important that we do the best that we can to address this both from a research standpoint and from a clinical standpoint so what I'm going to try to do today is lay out what you're dealing with with regard to the complexities in dealing with pain and try to optimally prepare you to go into your movement Oh specialist or your neurologists office and make the best use of your time so during that time that you have with your specialist they are focused on you for the half hour that you have if you're an academic center if you're in a private practice they may only have ten or fifteen minutes to give you so you need to optimize and have every tool ready to make the best use of that time to get your pain addressed so this is a classification of the types of pain so this was developed by Blair Ford a colleague of mine at Columbia University about 10 or 12 years ago before this there was a number of different ways that pain was being classified but this is what has stood the test of time and this is what we're gonna be talking about today so there's musculoskeletal pain there's pain due to dystonia or dystonic pain there's nerve related pain which is also called neuropathic pain or radicular pain this primary or central parkinsonian pain there's restlessness or akathisia now this isn't as common as some of the others but some patients experience this and I'll talk a little bit about it as well and then I've added gastrointestinal pain because there is a specific subgroup of patients who actually experience pain gastrointestinal visceral pain that is to this day still not really well recognized it's not part of the official classification of Parkinson's disease pain so musculoskeletal pain in Parkinson's is the number one cause of pain so how is it that the symptoms of Parkinson's disease are giving rise to musculoskeletal pain so if you think about it all of us our whole lives have had the same neural pattern of activity that's given rise to muscle movement now when you develop Parkinson's disease now we have rigidity to deal with and we have brady kinesia and you're moving slower you're stiffer your movements are smaller and so how does that affect you in order to do the same type of postures that we do on a day to day basis you need to engage different muscle groups or different muscle patterns now for example patients with Parkinson's disease often will develop a stooped posture their neck will start to fall forward that produces very abnormal muscle strain on muscles that normally are not that taxed when you have decreased arm swing in your shoulder you can develop a frozen shoulder decrease activity in the a lack of arm swing can actually change the way you walk and it can change the way you reach for things right when you're walking and you have decreased step size and you're taking smaller steps you're taking smaller steps to turn when you go to sit down in a chair you have to do it very carefully you're using different muscle groups than you've ever done before so everything your body has learned over the course of your life has now changed because of the symptoms of Parkinson's disease so this gives rise to awkward body mechanics right so everything that you've done is no longer the same you having to adjust and so when you adjust you're developing pain and you're getting these unusual musculoskeletal stresses so tendons are getting beat pulled in ways that they never have been before you're you're developing pulling up muscles or nerves and then muscles are tensing around that to try to protect it and that's giving rise to musculoskeletal pain so all of these things give rise to the final result which is muscle cramps and joint based pain and you can you can see how the process of this would go and it's difficult because many patients in your age group already have musculoskeletal pain so this is happening on top of whatever musculoskeletal pain people in your age group would be experiencing normally right it's all combined together so this is just a mention of some of the things that we talked about the cramping are aching can occur in the neck back arms or calf muscles and musculoskeletal pain joint pain when it occurs is often in the shoulders hips or knees I'm sure there's many of you out there that are experiencing this it can be more pronounced in the more prominent side with regard to your symptoms but it can also be bilateral so it's variable that way with regard to patients it may or may not be related to your motor fluctuations so there are patients who when they turn on and their medications are working well their pain goes away and when they experience off phenomenon and the medications are no longer working their pain comes back for some patients it has absolutely no relationship to your on and off in your motor fluctuations and you're in pain all day long for other patients it does fluctuate but there's no temporal relationship between the on and off phenomenon or motor fluctuations so huge amounts of complexity in some patients it's just morning or it's just in the afternoons in some patients it can correlate with your total overall level of disability so when we have you doing that test or you're tapping and opening and closing and turning that you're all experts at now sometimes we can find correlations between that and the degree of pain that you have and it can mimic other systemic disorders like rheumatoid arthritis so very very difficult to sort all these things out when you have musculoskeletal pain it can give rise to spinal deformities right so if you have abnormal stresses on the vertebra of your spine you're developing narrowing of the canals which the nerves go through and you can develop radicular pain or you can develop nerve pain when that that increase in the the vertebral size gives rise to inflammation and bone growth sometimes it can develop spinal stenosis right so it's all connected and and and although patients in your age group can develop these things anyway it's much more complicated when you have this on top of what you're already dealing with so that's musculoskeletal pain it's the most common type next is dystonic pain and I think we should just try to take a step back and think about what is dystonia because often when we're in the office we'll will be asking me to experience dystonia do you do you experience pain and patients are thinking I still can't figure out what's dyskinesia and tremor how am I supposed to know what dystonia is right a lot of people experience that so when we talk about dystonia what is it that we're talking about so this is a little bit of an older definition that I find the most useful when talking to patients so it's a syndrome of sustained muscle contractions it causes either twisting or repetitive movements or abnormal postures due to co-contraction contraction at the same time of both agonist and antagonist muscles right so if I need if I go to do a movement whether it's a reaching movement or any kind of movement I need to activate the muscles required to produce the movement I need to inactivate the muscles that are required to allow the relaxation to happen right because if the whole arm is wax it'll just shake and so when you have dystonia in addition to activation of the muscles that you need to activate you also have activation of muscles that are not involved in a movement at all and you have activation of muscles that are specifically supposed to be relaxed to allow you to do them and so all of this can give rise to pain pain that's secondary to dystonia can occur during off periods or on periods and when dystonia mixes with musculoskeletal stiffness you can develop contractures so there are some patients who you've seen who develop and some of you might have this the fingers get sort of flexed at their at the most proximal joint and then they arch upward it's called a striatal hand and this can happen from the combination of musculoskeletal pain and dystonia dystonic pain can occur at rest or with movement when it's off because we said it can be offer on usually if you're gonna experience off dystonic pain it's gonna be your toes curling in the morning so you wake up in the morning after not having some cinnamon your toes curled downwards or sometimes maybe the toe goes up and you keep wearing out your shoes because you've got that little Ridge where it just constantly is rubbing on the top of your toe and causing pain some of you might have experienced that or maybe you have the experience of your foot turning in when you're trying to walk and you go to put your foot down and it's turned in and tilted down and you're not walking normally which you can imagine what that does to your hips right so that's another way that the different types of pain are connected and as I mentioned can contribute to to the development of contractures so that's dystonic pain musculoskeletal pain what about nerve pain so this is another common one not quite as common as musculoskeletal pain but very common this is pain that's due to either a problem with the nerve or where the what's called the radicular component where the nerve starts to exit the spine and it can produce burning tingling numbness type of sensations what allows us to know that this is the type of pain that's going on is it occurs in the distribution of a specific nerve if it's the median nerve it's the ulnar nerve it occurs in that distribution if it's if it's a root that's coming out and it occurs in the muscles and the skin that's innervated by that root so that's what helps us to determine when someone's having neuropathic pain it can also lead to postural deformities and immobility and repetitive dyskinesia or tremor can predispose to the development of this there's also some literature to suggest and many you might have come across this that the treatment that we provide for Parkinson's disease can give rise to or contribute to neuropathy so you'll see this in the literature as a big question is Sinemet contributing to neuropathy is neuropathy happening on its own now this is an active area of research everyone I think agrees that the benefits of Sinemet at this point weigh the negatives and the possibility of developing neuropathy but it's something that needs a lot more attention and if you're experiencing your Pathak pain it may be helpful to talk to your movement disorder neurologist about it because there other tests that can be done they can look at your b6 level they can look at your b12 level and decreases in these vitamins have been associated with neuropathy in patients with Parkinson's disease not a lot of you are going to experience this but if you do you may have never had an explanation for it so some patients experience this is a rembrandt it's harder to see in the picture here but it's a ship at sea and very very rough waters and so some patients who have Parkinson's disease either throughout the day or periodically will experience this a subjective feeling of inner restlessness it's not like the restless legs that you feel where your legs feel uncomfortable and you have to move them and that allows your legs just start to feel normal again it's a general feeling of restlessness you can't quite you don't want to get up and walk around because you're tired but you don't want to sit still you just feel overall you're intolerant of remaining still so this is a type of pain that can occur in Parkinson's disease as well because all of the so pain we talked about is a complex factor but the signals that create pain are signals that are coming from the periphery the same type of signals in general that causes other sensations so we need to recognize this when it occurs because there are specific treatments for it that are different for other types of pain this is the addition that I have to the classification of pain and that's gastrointestinal pain I have a number of patients that experience bloating gas pains distant dist Mia sometimes you can feel like you're having a heart attack for some patients and it all can be associated with the decrease in the speed at which food moves through the gastrointestinal system we all know that constipation is a part of the disease some piece can have delayed gastric emptying so medications don't work as well and sometimes it can back up and actually cause problems with heartburn so that just shows how complicated Parkinson's disease is because it affects every system of the body so this is also under-recognized central or primary pain in Parkinson's disease from the neurologists point of view is probably the most interesting and most interesting from a scientific standpoint for you all I don't think any of the pains you experience would be described as interesting however this is the one that is directly related to the brain and function in the brain it's variably described by patients as a diffuse burning cramping a stabbing and aching pain it can be more on the area of the body that's more affected by Parkinson's disease it doesn't follow a nerve root or a radicular format the way a nerve type of pain is and it can sometimes affect very unusual areas like the genital area or the mouth and when that happens patients will see a dentist or perhaps someone not even no one will make the connection that this can actually happen is a part of Parkinson's disease so also very important to recognize the reason that central pain occurs in Parkinson's disease is that the basal ganglia the part of the brain that we're always talking about right the decreasing dopamine in the basal ganglia and the loss of cells in the substantia decreased dopaminergic levels in this area so this area of the brain is also involved in pain processing and the basal ganglia itself plays a role in the experience of pain right because we said it's a very complicated experience so our best guess right now is that dopamine depletion actually amplifies the sensory information that comes to the basal ganglia and so things that wouldn't normally be painful when you have a basal ganglia that's affected by Parkinson's disease is going to be experienced as painful now in addition to that other parts of the brain that are classic for pain involvement that everybody's been studying in pain neuroscience for years can also have the Lewy bodies that dr. Okun was talking about this morning in the dr. McFarland studies and so that can also give rise to the central pain that people can experience in Parkinson's disease and prior studies have shown so this is basically an image that's created based on parts of the brain using glucose so you can see on the top those are Parkinson's disease patients who are off medication you see the increase in the red those are all areas of the brain active when you provide a painful stimuli and on the bottom row at the very bottom is that's the area of the brain that's active and producing and burning more glucose when a normal person experiences the exact same stimuli and what you can see is there's more areas of the brain activated in patients with Parkinson's disease and when they take their medication so on Sinemet which is the second row it actually starts to normalize so we know that patients with Parkinson's disease do not process pain stimuli in a normal way and that this is one of the things that gives rise to pain in a disease so we talked about the classifications of pain we talked about musculoskeletal pain most common we talked about pain due to dystonia often happening in the mornings or sometimes it can happen when you're getting on dystonia we talked a little bit about the nerve pain that can occur in Parkinson's disease it's much more of a given pattern the type of pattern that you see with an individual nerve or an individual nerve root we talked about the central or parkinsonian type of pain that can sometimes occur we talked about the restlessness that akathisia just not feeling like you can sit still that's a form of pain in Parkinson's disease and we talked about gastrointestinal pain this is a slide it's hard to read from here so I'm not going to go through it in detail but basically it puts them in the order of frequency that they're experienced and you're always gonna see gastrointestinal or musculoskeletal pain first usually in most studies and it's been a little bit variable the next one that's often seen as neuropathic pain and then it goes down to the more rare types of pain like akathisia central pain is sort of in the middle but I think for many people central pain is not actually recognized as such and so it gets overlooked so now that you guys have a bit of an understanding of the lay of the land in pain in Parkinson's disease you see how complicated is you've got a framework in your mind to see how it's classified let's think about the average patient who walks in and wants to talk about pain with their movement disorders neurologist so this is someone that let's say is in their late 60s that has had Parkinson's disease for six or seven years now and first of all in addition to having Parkinson's disease they may have some degree of degenerative arthritis right so that's giving rise to pain so that's noise in the signal it's gonna be there there's nothing we can do about it as their movement disorders neurologist they're gonna mention it but we're not gonna we're gonna our job is to have to try to separate that out from the pain that might be occurring secondary to Parkinson's disease itself so you've got that pain going on the background and then maybe three weeks before there was a fall and there was an injury to the hip and you've got the injury of the hip that's still sort of lingering over and you're there to talk about pain you're not thinking about all the ways that this is fractionated you're throwing it all out there all together right so now we've got the the osteoarthritis related pain and the pain related to the injury that was already there before and let's say here so this is just a image that shows as you're going up this is the ons and off of motor fluctuations right so you might have a patient who when they're off medication is experiencing dystonic pain and dystonia and then as they start to turn on the dystonic pain goes away and then they hit a peak dose and now they may actually be experiencing central pain related to Parkinson's disease or maybe they're more mobile now and their neuropathic pain that was not triggered when they were less mobile and couldn't walk around is now flared up and ready to go right so now you've got a different type of pain that's happening in the lows of the fluctuations you've got a different type of pain that's happening in the peaks the times when the medication is working at its best you've got that osteoarthritis in the background you've got the fall from three weeks ago and this is all mixed together and we've got five minutes to talk about it so you see how complicated this is gonna pay right it's really really tough to do so I've written a book chapter on this I've talked about it a number of times and I'm still not happy with the way I addressed this I think as movement disorders neurologists we don't do a good enough job but with this it's one of the things that we all I think struggle with so hopefully by allowing you all to come in with the most information that you can and the best preparation that you can we can make the best use of the time that we have together this is I was good listen some of the factors that go into pain it's a little too small I think to go into detail but I think we've established the fact that there's lots and lots of factors and feature that give rise to the complex phenomenon that we experience and know as pain so how do we make the diagnosis of pain in Parkinson's disease the most important thing is the history and the exam it's it has to be blended in with everything else that we do because as we talked about when you come in for your visit we need to talk about your bowel habits and constipation and we need to talk about whether you're getting dizzy we need to talk about your mood we need to talk about whether you're enjoying things your appetite there's so many different things that there are we've got a little bit of time to talk about Parkinson's disease related pain however that's the most important factor in evaluating what the next steps are to do sometimes we may order an x-ray or bone scans bone scans if you're looking for loss of bone density x-rays if you're looking for broken bones or if you're looking for abnormal growth of bone due to inflammation CIRA logic stacks tests can sometimes be helpful a lot of times that's going to be sent to your primary care doctor to do and this is something I'm going to talk more in one of the future slides however pain related to Parkinson's disease is complicated enough that it needs a team approach separate from the regular team approach that we already do as an interdisciplinary Center you may if you want to address the pain that you have have to involve your primary care doctor you may need to involve a pain specialist you may need to involve an orthopedic surgeon you may need to involve a neurosurgeon and all of this might take months to actually sort of play out all those all that time you're still having the pain so as proactive as you can be is going to move you closer and closer to control of that pain in a short period of time as possible so these are just some of the things that can help us to establish the diagnosis when someone's experiencing pain in Parkinson's disease so treatment of pain in Parkinson's we talked about being proactive one of the things that you can sometimes do if you are experiencing a lot of other motor symptoms with here when you see your movement asuras neurologist or your neurologist it's asked them to say okay this is I understand a complicated topic I understand we can't talk about all the things that we need to talk about in the half hour that we have together and in the last five minutes I'm gonna cure your pain why don't we set aside a specific visit that's just going to be about pain so you can see one of the the other providers to handle your fluctuations or you can add a visit but actually having a full amount of time the full amount of time that we can spend with you just to address pain is a really good idea to do if you feel like you're not getting anywhere otherwise in addressing pain related to Parkinson's disease and I've talked a little bit about that the team approach having a general neurologist locally who may be able to help with regard to your neuropathic pain so many people have spinal stenosis or sciatica or pain related to the sciatic nerve even if they don't have Parkinson's disease so decreasing the burden by having little parts of this addressed by other other providers and other diagnostic tests by other providers helps to make it move along as quickly and as easily as possible and what's the most important thing bring that information with you when you come to your visit right because we'll be able to we've got our half hour to devote to purely to you I want as much information as you can give me during that half hour to allow me to make the best decisions that are gonna move things along to improve your quality of life as quickly as possible so treatment of musculoskeletal pain in Parkinson's disease some patients actually will notice that their musculoskeletal pain gets better when they're appropriately dosed on cinema right so that's one of the one of the one of the things that we do the best at because we're already adjusting your Sunnah in any way throwing pain in there into the mix as one of the variables that we're thinking about when we're trying to figure out what the best dose of medications for you is is not that difficult for us to do so that's more of an easy one to address not that you're going to respond because as we talked about there are patients who when they're off they're not really having much pain when we actually improve your motor enough that you're up and around and moving and going and walking pow sometimes the musculoskeletal pain that was hidden before because you're not doing very much comes out so it's not automatic that we expect we just increase your cinema and your pain is going to go away it's complicated so that might happen that might not but it's something that we do a reasonably good job at least of thinking about with regard to other types of pain which I don't think we do a very good job overall general pain relief so musculoskeletal pain that's related to Parkinson's disease will often respond to the same type of treatment that your primary care doctor or a neurologist that is not a movement disorders expert is going to provide for you so they can be helpful members of the team in trying to decide what to do so Tylenol motrin medications like that can sometimes be helpful in patients who are very severe with regard to the degree of musculoskeletal pain that they experience opiate medications may be appropriate now that's not something that your movement disorders neurologist is going to go into with you go into with you but there are some studies that have shown that opiates can be helpful in a subgroup of patients who have pain so if you want to get into that group of medications or if that's what's required it's very likely that you're going to need coordination between multiple providers and you're probably going to need to have a pain management specialist exercise and physical and occupational therapy are super super important so just by being here you all are amongst the most educated patients who have Parkinson's disease most patients don't go out of the way to attend functions like this even when it is available when it's it's not in many places so you're already at the right side of the curve with regard to this and appreciation of the importance of exercise and occupational and physical therapy is something that I think you all appreciate more than the average patient some patients that I see their visit with the therapists whether it's speech therapy or physical therapy or occupational therapy is actually more important than what I do because I'm adjusting medications sometimes it goes well sometimes it doesn't the physical therapists are of the utmost importance and so making sure that that's part of the interdisciplinary group that's involved in providing you the best care possible is is really important some patients if we get better control of their dyskinesias their pain starts to get better so as you can imagine if you have dyskinesias in your neck and you're constantly moving your neck and for some of you you may experience dyskinesias when you're you are hitting a certain peak time can be pretty significant and it can give rise to degeneration in the spine and in the thoracic muscular skeletal system so addressing dyskinesia can be important and making sure that you involve orthopedic surgery pain specialists and rheumatologic consultation let's say for example rheumatic arthritis is really important as well because everybody's got a different level of expertise and everybody's going to come to you with a different number of tools that they have in their box and you want to have as much of this as possible focused on the problem that you have that you're trying to address treatment of dystonic pain so adjustment of dopaminergic medications this is something that we also do pretty well we talked about dystonia if we can recognize it and we can separate it from the other types of things that are going on we can make increases or decreases in your medication so let's say you're experiencing just off overnight dystonia your toes are curling down in the morning and we can address that by giving you a controlled release dose overnight or you're experiencing on dystonia and we can shave your dose by a half a pill it's not going to cost us too much with regard to your motor symptoms but we can actually take a big portion of that dystonia away those are things that we can potentially do sometimes other medications like a man to dien can be helpful from that regard as well some of you may be get Botox injections for your dystonia and the soles of the foot for the toes curling down sometimes in the top of the foot for the toe that goes up sometimes if your foot goes in and downward the way we talked about Botox goes directly to the muscles that are involved in the movement if you put it in the right place and that can be very effective in treating dystonic pain medications like anticholinergics benzodiazepines baclofen our variable some patients they work pretty well for some patients too just don't tolerate it so it doesn't matter if it works anyway but it should be something that you're considering it should be on the menu and you make the conscious choice no we're not going to try that and it's for this reason if you do want to try one of these medical patience for dystonia or something else you want to know what is your target what are you trying to achieve how are you going to measure whether you got there or not is it going to be based on what you described is it going to be based on the UPD RS because any of these medications are going to have side effects and we have to have a way to decide to make the decision whether the benefits outweigh the risks deep brain stimulation can help in some patients with dystonia it's not one of the classic things that we will describe it's hard to predict whether it's going to help or not but in some patients that can be helpful so treatment of nerve pain in Parkinson's disease there's a number of different medications that you can try some people have been on cymbalta some people have been on gabapentin different types of anticonvulsants topical lidocaine helps topical capsaicin helps for some people antidepressants keep in mind a lot of these medications that started as an antidepressant or started as a seizure medication didn't do very good and what they were described that they were originally designed to do but pharmaceutical companies put a lot of time and effort into these medicines so they want to know if it doesn't help this does it help this and we found that medications have been repurposed over the years and can be very effective and so if you're prescribed a medication that says antidepressant and you actually are on it for you think you're on it for neuropathic pain it might actually work so don't be thrown by that again opiate medications for some patients can be helpful in nerve pain that's usually only the most severe patients physical therapy isn't always important cost oral hygiene splints and braces may be a part of what works for you appropriate orthopedic or neurosurgical referral can be important cannabinoids so this is the first time you're seeing this word on the slides today but I bet this is the one that all of you were thinking about because when you see Parkinson's disease and you think of pain first thing you're popping into your mind is cannabinoids so we're at a point now to where it's really difficult to get a sense of how helpful this is going to be there is some sense that it actually will be helpful for nerve pain it may also be helpful for musculoskeletal pain there's a couple of studies that have suggested that I didn't put in them in the list for musculoskeletal pain because it's just - pretty much in the state of Florida we do have access for Parkinson's patients to cannabinoids and some of you in the audience may be HAP maybe I've taken them and I've actually had a benefit for pain so it's definitely a possibility it's a little early for us to know from a research standpoint how if we can sort of put our rubber stamp on it and say this is something that we think is going to help you I can say for most patients for the vast majority of patients that have tried it the risk of side-effects has been relatively low the biggest hit has been in the wallet right and then other times it just doesn't work but most of the time it's not going to actually cause problems for you because the parts of the brain that are involved in Parkinson's disease also have these types of receptors akathisia although it's rare when it happens it can be truly disabling and miserable so sometimes it responds to dopaminergic medications sometimes it does not there are patients that have responded to clozapine which is an older anti-psychotic medication that some of you might have been on though that's the one that people if you're not on it or if you've discussed it requires the weekly blood draws because otherwise it can cause a granulocyte OSIS opiates dopamine agonists gabapentin are all used for restless leg syndrome the reason I listed up there is when you're talking about akathisia you have to think about restless legs because they're so commonly mistaken for each other so you want to be if you're if you have if you have a diagnosis of restless legs and nothing's working make sure they go back and think about could this be akathisia because maybe that's what it is and it's not related to too restless legs directly GI pain can sometimes be treated by medications that increase gastrointestinal mobility some of you might be on the lens s or a mateesah some of those medications gonna be helpful increasing your your water intake or your fiber intake can be helpful changing the times of day that you eat it can sometimes be helpful as well in reducing the type of pain that sometimes develops so these are things to keep in mind treatment of some essential pain in many patients can be treated by dopamine and a good number of patients actually when they're well medicated the central pain goes away and in their offs that's when it starts to comes back so that's the first thing that you need to think of it might work it might not some of the other things that are listed here anti-depressants anticonvulsants you're seeing a trend here right these are medications that have you've seen on previous slides and they're not up here because they're so perfectly effective they're up here because we're trying to find what's gonna work best with what we have available and so we have to try things and take what we can get because we don't have a great way right now to address this we can't address it in the same way that deep brain stimulation for example it just as the rigidity and the stiffness and the dyskinesias so well we're doing our best with this but we're behind the power curve with regard to actually making a big difference with this okay so we've gotten through pain hopefully without too much pain we're about 20 minutes from lunch so if you're getting hungry there is light at the end of the tunnel and so now we're gonna try to spend the rest of the time and we might actually finish a little bit early as well so hopefully we can start eating a little bit really so what's that spend the rest of the time talking about fatigue and Parkinson's disease so in our little cohort here when I asked everyone to raise their hands we had more people that were experiencing fatigue than we did or experiencing pain now just like pain in a population of middle-aged to older people fatigue is very common anybody who has kids is gonna say yep I've got fatigue anybody who works multiple hours per week is gonna say they have fatigue but the fatigue that patients with Parkinson's described is completely different than what people normally mean when they're talking about fatigue so we'll talk more about that we'll talk about how common it is we'll talk about what other symptoms are associated with it when it occurs what the treatments are but there's one take a home take-home point that I really want you to take with you and that's separating fatigue from its closest mimic and so we'll talk a little bit about that do we still are we still okay on time five minutes we can do fatigue in five minutes no problem okay so what is fatigue in Parkinson's disease it's a state of extreme tiredness nonspecific weakness lack of energy or exhaustion patients who have Parkinson's disease and experience fatigue I often like you you've just run the New York City Marathon it's not that you're tired you're just completely wiped out and all you did was your normal day-to-day activities fatigue doesn't have to be physical you can have mental fatigue and feel like you've just taken the entrance requirements to join Mensa and all you did was make your coffee in the morning so this is not unusual so you can have mental fatigue in the same way that you have physical fatigue and stress can modulate it a lot okay so it's 30 to 70 percent of patients with Parkinson's disease look at these numbers this is the same type of magnitude of numbers that we were talking about when we were talking about pain tremendous number of patients with Parkinson's disease experience fatigue about fifteen or thirty percent of patients actually rated as the number one on top most disabling symptom that they have Doc's done a great job of controlling my motor fluctuations my tremors gone I'm walking I'm doing well but I don't do anything because I'm exhausted all the time and I'm not sleepy I don't go and take a nap I'm just exhausted and that's the key feature that we're gonna talk more about in some patients that disabling overwhelming fatigue can be the presenting symptom that you actually have it can happen before you see the motor symptoms before you see the tremor and the stiffness and the rigidity in some patients it correlates with severity or disease progression sometimes it doesn't sometimes it comes and goes throughout the course of the day and sometimes it's there just all day long it can be associated with depression apathy or a built in ability of joying things or inability to feel pleasure all the patients who experience this as well tend to experience a worsening in the fatigue that they have so this is that that take-home slide that I meant to tell you about so if you go to your doctor's you're moving to sort of special and you say I have fatigue you want to be very careful that what you're talking about is what we just described and not excessive daytime sleepiness if you're waking up multiple times to urinate and you wake up in the morning and you feel like you didn't even get any sleep and you're taking naps throughout the day and you don't have any energy to get up and do everything and you're always falling asleep you have excessive daytime sleepiness your problem is not fatigue you can have fatigue associated with excessive daytime sleepiness but if you have fatigue and it gets mislabeled as excessive daytime sleepiness you're gonna spend months going down the wrong road and the same thing the other way if you have excessive if you have fatigue in people or excessive daytime sleepiness being treated as fatigue you may not get anywhere so you have to be very very careful when you go to see your your your provider whether it's a moving source neurologist or not that your understand and are thinking about is my problem that I'm falling asleep multiple times a day because I'm always sleepy or is my problem that I have that overwhelming sense of fatigue that we talked about earlier and I went got up had breakfast made coffee and I needed to go lay down I didn't go to sleep I just couldn't do anything else because I was so fatigued so if you take nothing away from this component of the talk if you can differentiate between those two you'll already be ahead of most patients who have the disease so treatment of fatigue first of all you have to figure out what component is related to excessive daytime sleepiness we may need to send you for a sleep study we may need to provide medications to help to consolidate your sleep overnight we need to take that out as a variable to see what's left over after we correct it in some patients you can use the same type of medications that you can use for depression so SSRIs tcas so medication is basically it helps in some patients in some patients it doesn't do anything exercise can be helpful in some patients but it's not a cure-all there are studies that have shown that some patients do not have an increase in fatigue when they exercise when you specifically look at the fatigue that we're talking about here sometimes other medications like mao-b inhibitors so saline for example this is a trick if any of you in the audience have ever seen me that I sometimes use so ledge lean is when it's metabolized in the liver produces a small amount of amphetamine and you can use that by product to provide a little bit of pepper in the day and it can work very well it can be well tolerated so it's one of the first things that we can do that's very easy to do there have been studies that have suggested recycling can also help with daytime fatigue the studies for the dopamine agonists is variable and levodopa is also variable in some patients believe it over actually worsens the fatigue in some patients it actually makes the patient's feel like they have more energy for patients who have severe symptoms either methylphenidate or modafinil our medications these are medications that we give to people with narco usually are reasonable and worth trying doesn't always work sometimes you have to weigh the risks and benefits but that's also a possibility there are some patients who responded with regard to fatigue to DBS but that's not a reason to get DBS because it's very difficult to predict and more likely than not it's not going to make a difference so we made it through fatigue in almost 5 minutes we talked about different aspects that play a role in the development of pain how complicated it is to study and to address and now hopefully you have a lot more ammunition and a lot more understanding of what it is that it's going to need to be dealt with if we're going to defeat this and in the same way with fatigue now you know how to separate it from excessive daytime sleepiness so you're not going to waste three months with your movement disorders neurologists trying to sort out between the two and hopefully this type of information and talking to your care provider and investigating online at sites like the Michael J Fox foundation the Parkinson's Foundation the Davis Finney foundation can help us to beat the symptoms of the disease and improve your quality of life on a day to day basis thank you all for your attention [Applause] so I put these slides up here I know you saw them at dr. oaken's talk already but for those of us that provide the care the best care that we can for you having a center like this is a dream come true because it really allows us to provide the best level of care that we can so we're super excited about it if you do get your care at movement disorder center here in Gainesville don't go to the wrong place in three months because we're gonna be at our new location that's the address up there and you should be getting phone calls and mailings to remind you so you don't on autopilot go back to the orthopedic center now if you have some types of pain they may be able to help you at the orthopedic center but you're gonna be really late for your appointment so make sure you go to the right place take care [Applause] you you

Channel: Norman Fixel Institute for Neurological Diseases

Views: 415,093

Keywords: UF Health, UF, Florida, Okun, Foote, Movement Disorders, Health, Hess, Pain, Fatigue, Parkinson Disease, tired

Id: iPWk-XpBO20

Length: 48min 8sec (2888 seconds)

Published: Mon Jul 29 2019