MS and Fatigue: Tired of Being Tired - Ben Thrower, M.D. - November 2015

thank you very much to all of the MS foundation staff for for helping put this together I think I see some familiar faces how many of you here is the first this is the first one of these that you've attended so we have all couple of folks so everyone's regulars here so you you all know that this is going to be a monthly lecture series we're trying to pick a broad range of topics in regards to multiple sclerosis this evening we're talking about fatigue and multiple sclerosis fatigue is the most commonly reported symptom in multiple sclerosis and many people with MS would list this as their most bothersome symptom depending upon whose research you believe fatigue is either the first or second most common cause of vocational disability and MS the other common symptom being cognitive dysfunction so when you think about things that take people out of the workforce fatigue is up there's either number one or number two so this is the eight-legged monster of fatigue and multiple sclerosis fatigue again is very common in ms but it's also very complicated and so what we've got are the eight arms of the octopus here and that's a reminder that there are different things that can contribute to fatigue and multiple sclerosis and every one of these arms is connected so this is not to say that you'll have all eight of these but this is the thought process that healthcare providers that work with multiple sclerosis go through through when we think about fatigue and multiple sclerosis so it's complicated but the good news is sometimes we can affect multiple parts of fatigue in MS when we treat one of these arms again because they're all connected so the things that we're going to talk about this evening are the two primary ms fatigue factors and that's one called lassitude and something called nerve fiber fatigue and we're going to go into each of these topics in detail we're going to talk about mood disorders in specific depression and how that might contribute to fatigue and multiple sclerosis we're going to talk about medications and fatigue as a side effect of many of the medications that we use in ms we're going to talk about D conditioning and how contributes to fatigue in ms we're going to talk about something called compensation and that doesn't mean we're paying people that means how you adapt to some of the things that ms is throwing at you and how that can be good but how it can also contribute to fatigue and multiple sclerosis and then we're going to talk about other health conditions and how those can also contribute to fatigue so the two things the two sub categories of primary ms fatigue are lassitude and nerve fiber fatigue lassitude is someone unplugged your energy supply you didn't have to do anything to do it the battery is drained its fatigued that's not necessarily related to heat or exertion it just is there and then we're going to talk about nerve fiber fatigue so this is the sort of fatigue that is typically brought on if you get overheated if you overexert yourself or maybe you do both of those at the same time so lassitude again the so when we talk about fatigue we really need different terms than just fatigue because if you ask anyone in society do you get tired from time to time everyone gets tired fatigued with multiple sclerosis is by definition at a level that it makes you non-functional lassitude has been described as like trying to swim with a fur coat on it's been described as someone who's thrown a lead blanket over you so you know what you want to do you want to do an activity you want to go to the store you want to go to the movies you want to participate in life but your body's not going along for the ride you just are too physically tired to do that interestingly this sort of fatigue lassitude may not correlate with overall disability we have people who really look pretty good but they're not functioning very well because of the lassitude that they've got it also may not correlate with how abnormal person's brain MRI is there's some research that would indicate that this sort of fatigue may actually go along with some of the immune changes that we see in multiple sclerosis the immune system is complicated and one of the ways that the immune system function is through chemical messengers called cytokines some of these cytokines cause inflammation and some of these cytokines cause inflammation may actually be the cause of underlying fatigue so how do we treat lassitude and multiple sclerosis I know this sounds cruel but if you think okay you say I'm really tired I can't do much and now your doctor nurse nurse practitioner physician assistant says you know what you should exercise that sounds like a cruel joke you just said I'm tired and I can't do anything but exercise is the first line of defense against fatigue and multiple sclerosis we know that there's a hump that people have to get over to get into a regular exercise program but study after study has shown this energy conservation learning to work smarter and not harder so a lot of people with multiple sclerosis and I suspect people in this room will say if I have a good day I wake up and my energy levels are good I'm going to cram three days worth of activity into that one good day because I might have a bad day tomorrow so I better get it all done today well the problem with that is then you have these days where you get a lot done and then you crash and burn for three days and people go up and down like that so therapists like physical therapists occupational therapists actually work in teaching people energy conservation teaching you how to pace yourself a little more effectively then we get into medications so one of the oldest medications that we use for for lassitude in multiple sclerosis is a manta diene amantadine is an old anti-influenza drug back in the 60s and 70s there was some thought that that fatigue and melt that multiple sclerosis might be linked to the influenza virus turned out the influence I had nothing to do with multiple sclerosis but when they treated people with in mess with amantadine about 40% of them got an energy boost from it 60% got nothing typically with the Manta Dean if you take it twice a day every day over about a month and you don't if you don't see anything with it you're probably in that 60% group that's not going to respond to it amantadine does have to be taken on a daily basis then we move up to things like provigil and new vigil pro vigils and new vigil war drugs that were designed to treat narcolepsy the FDA categorizes these as wake promoting agents most people would argue that provigil a new vigil are probably the most effective medications we have from managing lassitude and multiple sclerosis so what's the big problem why is it everyone with MS on provigil a new vigil because the insurance companies really don't like them these drugs are not FDA approved for MS related fatigue so they're off-label do we use other off-label drugs to treat fatigue and MS absolutely amantadine is off-label for fatigue and MS so why does your insurance company approve the Mantinea and they don't approve provigil a new vigil because provigil new vigil are expensive so the the we used to think that there was about a 50% denial rate from insurance carriers on provigil a new vigil for MS i would say these days is probably more like 80% these are drugs are very difficult to get paid for by insurance carriers then we go to the true stimulant drugs before there was provigil a new vigil we typically would use amantadine and then we would go to a Ritalin Adderall type medication once provigil came out we were more attracted to that now that insurance carriers are being so difficult with those drugs we're starting to go back to the true stimulant drugs so these are a different class these are more tightly regulated medications the they are amphetamine like drugs there is some concern about the potential for addiction or tolerance to these medications if I've worked with you before you know that I if you're on one of these medicines I tell people in all the years I've worked with multiple sclerosis I have never seen a person with MS get addicted to to Ritalin or adderall we know when people are getting in trouble with medications you know if you're using say hydrocodone or oxycottons for pain management we get the funny phone calls we get the phone call that the dog ate my prescription I lost my prescription aliens came down and stole my medications we don't get those funny phone calls with with Ritalin and Adderall these are what we call schedule 2 medications that means they're more tightly regulated so there cannot be any refills written everything has to be a written prescription so what we typically do with these drugs is we'll write three written prescriptions one for month one one for month two one from one three doesn't mean we probably need to see you back on every three month basis though I always tell people if you are using Ritalin or adderall or if anyone in your house is using it keep these medicines locked up the one of the bigger problems in high schools and unfortunately middle schools these days is prescription drug abuse there's a lot more of that going around and there is cocaine marijuana those things and a lot of the prescription drugs that are being abused in schools are kids stealing them from from the household and selling them at school and then we've got a siedel carnitine acetyl carnitine is a supplement that you can buy over the counter there was an interesting study called a double-blind crossover trial looking at acetyl carnitine versus amantadine to treat fatigue and multiple sclerosis what they do in a double-blind crossover trials they have one group of people with MS and they don't know which group they're in so one group on a Mantinea one group on acetyl carnitine and they have them keep Diaries and report how their fatigue is doing and then they have them stop the medication and take nothing for four weeks and then they trade so each group gets to experience both medication and what they found is that the people seem to get a little more bang for the buck with the acetyl carnitine this is over-the-counter we usually recommend a thousand milligrams a day again it has to be taken on a daily basis and some people do report that their energy levels are better a better with the acetyl carnitine so what about nerve fiber fatigue so this is the sort of fatigue that you get if you get overexerted or you get overheated so the classic sort of sign that was described way back in the 1800s with nerve fiber fatigue was utter offs phenomenon if you were here for the first lecture we mentioned dr. Hoff German neurologist 1800s and there were no MRIs there were no spinal taps back then so his version of an MRI is if he thought she had multiple sclerosis he put you in a tub of warm water and what he was looking for is to see if your vision got funky and if your vision dimmed out in an eye in that tub of warm water he said I bet you've got multiple sclerosis that's nerve fiber fatigue so we see that another way so we see people that you know if then when they start walking the first block of walking they're doing pretty well block number two that foot starting to drag a little bit block number three now their legs really dragging and they're starting to swing that leg out and about so that's nerve fiber fatigue the way that nerve fibers in the brain and spinal cord should work is on the top of this diagram so that's a that's a nerve fiber in the brain or spinal cord and it's coated with the myelin that in that insulation of the nerve fibers and the little yellow spots on there are called nodes of ranvier and normally what happens is the electrical activity that's going through the brain and spinal cord jumps from node to node to node very fast very efficient it's called saltatory conduction well now multiple sclerosis comes along and it strips that insulation away from the nerve fiber and now you can't jump over that big gap because there's a big gap of naked nerve fiber so you can see on the bottom there those little dots those are little baby steps so the nerve conduction is being regenerated in little baby steps and it is a way for the electrical information to get from point A to point B in the brain and spinal cord but that naked nerve fiber will always be the weak link in the electrical conduction chain and if you raise your core body temperature or if you exercise a lot that you drain the battery at that naked spot so that the electrical conduction just stops there and can't do anything else you're not hurting anything you're not damaging anything you've just drained the battery and once you rest and cool off it's going to that's going to start working again but that's why people with MS have heat sensitivity or sensitivity to exercise so that's what that conduction block looks like so what do we do about that well we try to keep if if heat is part of the problem we try to use cooling strategies so having people exercise in a cool swimming pool using a cooling vest when you go outside if you've not looked at a cooling vest and you know that your heat sensitive and you know you're going to be outside doing stuff in the summer the multiple sclerosis foundation has a cooling vest program that they if you can't afford a cooling vest or scholarships available to to get those for amino purity for me--not pyridine is a molecule that's been around since probably the 1960s it was made in mom-and-pop pharmacies and what for amino pyridine does back here for a second is it works at that area of naked nerve fiber the area of demyelination and it works on the the potassium channels there and it helps prevent that conduction block so it's not repairing the damage it's just letting you go longer before you kind of drain the battery there in around 2010 the FDA approved a drug called an Pyrrha and Pyrrha is delfan protein it is an extended-release form of four amino pyridine so it works the same way we still have both of these available so we can use either the compounded mom-and-pop pharmacy for amino pyridine generally insurance is not going to cover that you're going to pay out-of-pocket for it but it generally is not expensive or we can use the prescription in Pyrrha so when the drug company Accord wanted to get FDA approval for this molecule the amino pyridine molecule they had to pick something to study you can't say well I'm just going to make people function better when they exercise or I'm going to make them less heat sensitive well how do you measure heat sensitivity it's difficult so what the drug company that makes impera decided to do is they decide to look at walking so they looked at walking speed and what they wanted to show is that people could walk faster on the empiric and that's what they did so the good news is that the drug is FDA approved the bad news is that it really is FDA approved to improve walking speed and because it's an expensive drug insurance carriers will say okay you can use it but you're going to use it to improve walking speed so if I have someone who is not ambulatory someone who's in a wheelchair I'm probably going to use the for amino pyridine because what the insurance company is going to ask me to do is show that person's time to twenty five foot walk before and after ampere oh well if you're not walking that's not really applicable but that's where those two different medications come from one of the legal questions it was sort of interesting and it shows kind of a difference between the United States and Europe is in Europe their version of the FDA went to a court and they said well you can't patent this you this drug has been out there has been used for 50 years by mom-and-pop pharmacies yeah that would be like you know if the recipe for coca-cola and then Coco for years and years and then coca-cola stepped up and said hey we own that they're kind of doing it after the fact that's what the European version of the FDA is said to Accord this and you can't patent this so they still use for immuno pyridine in the United States they did let them patent it in and so we've got the two different versions of it what about mood disorders in multiple sclerosis depression is very common in multiple sclerosis some studies have said 65 to 70 percent of people with them that's what some point experience an episode of depression we used to think the depression was just a normal human reaction to a change in your health state and multiple sclerosis and and that may still be true for some people if you've taken a downturn or you're struggling with symptoms or maybe you're newly diagnosed there may be a normal human reaction to that change in your health but we also know that multiple sclerosis due to the changes in the brain itself can cause mood changes even when every life is going great for you so depression can be a biological symptoms like visual loss just like weakness and we need to be aware of that depression may be associated with with something called an adonia anhedonia is a greek term for a lack of hedonism means that you have a lack of desire to do things that would normally be fun so in sorting that out versus lassitude or fatigue can be tricky so what if the person with MS says you know what I know we normally go to the movies on Friday night and have pizza beforehand I'm just not up to it well are they not up to it because they're tired and they physically are unable to do that or they not up to it because the desire is actually gone and it one week it may be one in one week it may be the next the other forms of anhedonia or maybe you don't like to eat maybe you don't like to have sex maybe you sleep too much so these are the things that we look for so one of the clues as to whether you're suffering from fatigue lassitude or you're suffering from depression in anhedonia is to be honest with yourself and say if there's an activity that I am NOT able to do am I not able to do it of my my physical state am i physically too tired or do I really just not care about it is the fun actually gone from that because if the fun is actually gone if the desire is actually gone in there may be a component of depression in there so what do we do with with depression well sometimes we look at the situation what if there's something in life that is causing stress and depression and there's really an end in sight if this is going to be a time-limited factor first enough if you have an illness in the family someone's been through a divorce there's a death in the family some depression is normal we don't want to medicate normal human emotions out of people so sometimes having people just wait it out or have them work with a counselor have them work with someone in stress management may be the ideal treatment rather than going straight to a medication we come back to exercise again we're going to talk a lot about exercise tonight so exercise seems to help with both lassitude and with mood changes and then we get into medications and we've got lots and lots of antidepressants out there there is no one magic bullet that is perfect for everyone but we do have options with with medications what about sleep disorders in multiple sclerosis and this is usually when I start talking about fatigue with with one of my individuals I art here actually I was so how are you sleeping and one of the things to realize is that there is a difference between being tired and being sleepy you can be dead dog tired and not be sleepy and so that's it's sometimes a hard concept but people can have lassitude and you would think we'll go take a nap but some people who are really tired can't get to sleep and so there is a difference between being tired and being sleepy what studies and there been to in the past year found is that sleep disorders are very very common in multiple sclerosis including obstructive sleep apnea if we look at the non MS community we said well what does a person with obstructive sleep apnea look like you're going to say what's it's going to be a more likely a guy versus a woman he's going to probably be overweight he's going to have a big old thick neck he snores like a chainsaw and that may be true and multiple sclerosis - but we see an awful lot of thin women with obstructive sleep apnoea in multiple sclerosis so those usual rules don't always apply when we start getting some hints about obstructive sleep apnea ideally we'd like to get some some history from the spouse someone else who's in the house when that person's asleep and what we're looking for is that history of loud snore snore snore snore take a deep breath and then nothing there's silence and if you look at the person who's having this apnea or a period of non breathing their chest is still moving up and down like they're breathing but there's no air going anywhere because their tongue is dropped back into the back of the throat and it's blocked their airway well eventually as the blood oxygen level drops the brain is going to say this is not okay you should probably wake up now and the brain is going to kind of kickstart the body and say wake up and then you hear the arm and then it all starts over again even though this is very disruptive to sleep and when the person does that startle you would think they're waking up they're really not fully awake but they're not fully asleep either people with sleep apnea will typically wake up in the morning and when they get up they'll say you know what I'm just as tired when I now as I was when I went to bed so there's no restorative sleep so one of the questions that I ask people is is there a period of time when you first get to get up in the morning where you are relatively well rested even if it's only for an hour so once you get up and start moving around your energy level goes downhill quickly but is there a period of time where you do feel okay when you first get up if you feel really really tired from the minute your head comes off that pillow and we start getting some of these other pieces of information that sound like sleep apnea we're probably going to want to get a sleep study for you so with the overnight sleep study they're going to look for in all these these disruptions and sleep and look for other things that might be disrupting sleep also in the typical treatment for sleep apnea is the CPAP so the positive airway pressure what about other symptoms with ms that might be disrupting people's sleep if you have to get up every hour to empty your bladder that's not going to be very conducive to restful sleep so we look for things like bladder symptoms that are disrupting sleep spasticity at night one of the cruel things with spasticity it tends to be more problematic as a person starts winding down and going to sleep so if you're waking up frequently through the night with your legs tight jumpy painful and that's disrupting your sleep maybe this treatment for yours fatigue is going to be addressing the spasticity at night that's waking you up through the evening so almost any symptom that you can think of with multiple sclerosis we probably have a drug that we can throw back at you and that's both good news and bad news you know some of our folks look like kind of you know there's a walking Walgreens they've got this you know a little pharmacy of their own going and we have to be very careful about that one of the problems with so many of our medications is that a lot of our medications are associated with fatigue so we've got the natural fatigue of MS itself maybe with some sleep issues and then here we go throwing medications into the mix some antidepressants especially your older antidepressants like amitriptyline nortriptyline can be very sedating sometimes we take advantage of that we use them a tripling for pain management and if we give it to you as a bedtime dose maybe it helps you get to sleep if it makes you feel hungover all through the next day that's not what we're trying to do some of the anticonvulsant medicines that we use for pain management like topamax or - pyramid gabapentin can make some people kind of drowsy ironically some things some of the sleep aids can linger into the next day and make you feel hungover about three years ago the FDA came out with new guidelines on medicines like ambien and lunesta as they relate to women so ambien was found to have very different metabolism in women versus men and it was recommended that a lot of women on drugs like ambien might actually want to go with a half of the normal dose because a lot of women were waking up the next day feeling very hungover from from their ambien a lot of our folks yeah we use over-the-counter benadryl to help with sleep almost any over-the-counter sleep aid that you buy is if you read the ingredients it probably has diphenhydramine in it that's benadryl it can be okay some people will sleep well with it but again it leaves a lot of people feeling really really hungover so what are some of the other problems with benadryl or diphenhydramine dries your mouth out like crazy makes you constipated and it can also affect the bladder and make it more difficult for you to empty your bladder so those are some of the things we really have to watch out for if you are taking over-the-counter sleep aids and you find that you tolerate the diphenhydramine and it works for you by the generic diphenhydramine don't pay because you're going to pay three times more for a sleep aid that says it's for sleep versus walking right down the aisle and going over to where the allergy medicines are and just buying docked and hide remain if they stick a sleep label on it they raise the price about three times and in the drugstore anti spasticity agents so these are your baclofen is your Thais Ana Dean's clonazepam all of these things can be sedating one of the biggest problems we have in managing spasticity muscle tightness in multiple sclerosis is that most of our drugs are sedating so we can I can almost guarantee you in people with with muscle tightness in multiple sclerosis we can get rid of that with one of our medications we make you make you really really drowsy and you may be in the bed all day so the spasticity isn't really going to matter anymore so we have to usually go very slowly with these medications and see what the perfect dose is going to be analgesics like hydrocodone can obviously be sedating our bladder medications are debt Rawls and ditra pans those drugs can also be sedating and then lastly beta interferons so these drugs do make people feel a little flu like flu-like and rundown very individuals so some people do really well with our beta interferons Avonex play gritty Betaseron riba fix Tavia other people really feel wiped out with these drugs so one of the other arms on the octopus was deconditioning and i stole this from one our physical therapists christine Mennella so she said when we see a person with MS there usually is a bucket of disability and that bucket is bigger and some people and smaller and other people and there are two main ingredients in that bucket for everyone with multiple sclerosis there's the damage in the central nervous system from the MS damage in the brain and spinal cord and there's deconditioning we never know in of an individual how much of which of those is contributing to your bucket of disability some people are very deconditioned other people yeah and I see people in this room who I know are very regular exercises and are very fit for that person maybe deconditioning is not a big part of their bucket so what can we do to make that bucket bigger well we're not at the point where we can repair the damage in the central nervous system God willing we will be someday that we can repaired Milan Reem island a for right now what we do have control over is that deconditioning piece so we can make the bucket smaller by making that ingredient less of a part of that okay so here's a we the MS Foundation kindly provided some small door prizes so these are teaser for next week these are thumb drives and they have some great information from the MS Foundation so our first door prize goes to the person who can get their hand up the quickest who can tell me what is the best exercise for a person with multiple sclerosis I think I saw that one first we have recumbent bike okay hold that thought I think you are next walking swimming who said that right there so the best exercise is the one you have access to and you'll stick with those are all correct answers but really the best answer is it's whatever you have access to so you run this out to you just a second actually Derek you want to be here's here's Vanna White good catch so there is no one right exercise for people with MS walking is great aquatics are great the recumbent exercise bike I love the the exercise bike but the problem is you know if we look at our wellness program that we have here at Shepherd Center the biggest barrier to for our most of our folks participating in the wellness program is just the ability to get here we have people that live too far away so for that person I've got all this great stuff that I can do here but I can't get them here to do it so for that person maybe it's going to be joining the YMCA giving them some financial assistance finding an aquatics program that's going to be a good fit for them or maybe it's going to be giving them an ogre DVD that they'll do at home so you know is we're here tonight we talk about exercise in MS as if it's just a given we know exercise is a good thing in MS it wasn't so long ago that that was that we thought 180 degrees the opposite in the 60s 70s even into the 80s people with MS we're told do not exercise you're going to use at what little energy you have you're going to hurt yourself don't do it that evolved into it's okay to exercise and many of you have probably heard me tell the story before of jimmie heuga so jimmie heuga 1964 US Olympic downhill skier youngest person ever on the US Olympic ski team he's 15 years old he wins the bronze in the in the giant slalom that year along with with Billy Kidd and then a couple of years later his MS is diagnosed and he was in the era when people with MS we're told do not exercise so here's this guy who goes from world class Olympic athlete to being told don't exercise and he listened to his doctors he stopped exercising he became a couch potato and he said one day he said this is nuts this is not right I feel horrible so he said he went out he was going to ride a real bicycle well he had some balance issues and so he said he rode the Royal bicycle about five feet and fell off and he got back up rode at 10 feet and fell off but he said you know what I'm gonna stick with this I'm going to find exercise that I can do and he noticed that he felt better so he set up an on group called the Hyuga Center and they funded a lot of the original research and exercise physiology and MS a lot of it done at university of utah and they found that not only is exercise okay for people with MS it actually was good for people with with MS what they also found is that there was no one right thing for everybody and so they really started trying to custom-tailor exercise to whatever that the individual had access to what they also started teaching people is to exercise to your own internal target a lot of the Olympic athletes do something called the perceived exertion rating scale is learning to listen to your body and listen to your body when it says it's had enough so a lot of us when we exercise we have something in mind we say I'm going to do 30 minutes on the recumbent bike I'm going to do 3 sets of 20 chest presses and if I don't do that I'm a failure and I quit that's human nature if we don't meet our goals we get frustrated and we stop and that is nothing could be further from the truth in multiple sclerosis with MS you may be able to do five minutes of an exercise one day two days later you can do 30 minutes of it another day it's five minutes again and it's all good and so what the Hyuga people got people to do is is just learn to listen to your body and be okay with it I think one of the most valuable lessons I learned from jimmie heuga is if you have an exercise program no matter what it is let's say it's going down to your basement and you're going to get on a recumbent bike and one day you wake up you said what you know I'm just wiped out I'm tired today I don't feel like doing this go through the effort go downstairs at least look at the recumbent bike wave hello to it sit on it and then you can quit for that day but stay in the routine and even if you don't do much one day don't break the routine because you know and this is just human nature if you if you skip a day you're gonna skip the next day and the next day and that's why you know the health clubs will be full of new members January 2nd and come March most of those people won't be there anymore okay so that so the the menu here says I did a push-up today well actually I fell down but I had to use my arms to get back up so close enough I need chocolate now it is okay to reward yourself for exercise and use positive reinforcement whatever it takes to keep you in the program here with our wellness program we have buddy partners sort exercise partners someone that's going to hold you accountable if you know somebody's there waiting for you it's that much easier to show up so this is this is some of the research that early research that came out of our wellness program we have the basic wellness classes and I know we've got people here who participate feel free to jump in here so one of the early studies that we did was just looking at nine people so we had them go through I believe it was eight weeks of the program and look at just different things and what they showed is that their body fat was reduced the core strength as measured by crunches went up and their endurance went up just with that short of a period of time the FES cycle so kind of tagging on to the idea of a recumbent bike FES is functional electrical stimulation a lot of people with MS there they're going to tire quickly or that just not going to be able to go very far on the on the on a recumbent bike or any sort of exercise cycle so what the FES bike does is it we have electrodes hooked up that will actually facilitate your muscles moving and the question is what sort of benefit did we see also when you start looking at new forms of exercise are we seeing any harm with that are we actually making people worse and so what they found is they didn't make any people any one worse and in this group of people pretty wide age range 31 to 70 they were able to increase their time cycling and their resistance how hard it was to cycle they had a decrease in pain that a decrease in both physical and psychosocial fatigue so it was it was a good thing compensation and fatigue so what do we mean by a compensation compensation is doing something differently than you you were designed as a human to compensate maybe for weakness or or poor coordination or spasticity so you're having to work harder to accomplish the same activity due to some underlying in that symptom and the classic example of this would be compensatory mechanisms that people use to get around foot drop so if you have a foot drop and you not doing anything you're not doing it using an ankle foot orthotic a buying us a walk aid anything to help compensate with that foot drop what's going to happen is the two weakest muscles and in the leg and people with multiple sclerosis are their hip flexors and their ankle dorsiflex errs so if your hip flexors were fine and you're dragging your foot you just bring your hip up higher you're still going to tire yourself because you're using muscles to walk that you weren't designed to use well in ms if your foot if your foot is weak your hip flexors a weak and so what people do is a circum duct they're going to throw that leg out and around and if you you know we'll have people say I don't have any foot drop and we'll look at their significant other and say what do they look like when they're tired when you're walking behind them to say oh they're doing this they're swinging their leg out and around and it works but again you're using muscles to walk that you weren't designed to use and you're going to fatigue quickly the problem with that that specific motion is you're also putting stress on your hip and your knee and your lower back because we were designed to go that way and not that way so so treating an underlying weakness or treating the symptoms so that you don't have to use compensatory mechanisms can actually be a way of helping manage fatigue so some of the ways that we do that again is using assistive devices we're appropriate that you know there's several hurdles I think that we have that we see for for multiple sclerosis things that people have to get ok with in their mind one of the hurdles that we used to struggle with a lot is doing an injectable medication you know people didn't want to go on a shot for their ms people didn't want to another hurdles it was using an assistive device to help with walking people had a thought well if I use a cane if I use a walker if I use an ankle foot orthotic I'm it made them feel like they were giving in and that it was a sign that their MS was progressing on the other hand what our physical therapists have found is if you give people the right tool to help with walking you may actually make them more active not less active the person who's afraid of falling who's afraid of going to the mall and fatiguing probably isn't going to walk as much or it's not going to go to the mall as much whereas if we gave them the right equipment they're going to get out and be more active being more active may help with a lot of things their mood their energy so so we want to be thoughtful in how we assistive devices but it's not always a bad thing to use the right piece of equipment reconditioning we talked about exercise and we talked about for amino purity and impure can help with the nerve fiber fatigue and then lastly other medical conditions just because you have multiple sclerosis doesn't mean you can't have other health problems so here's here's our next next door prize so what are the top three things the person with multiple sclerosis dies from hand hand hand you scared people Derek now then give me so give me one even one of them so what is a common cause of death and people with multiple sclerosis Joan heart disease that is number one so we want to go for number two I'll give you a hint it's the same things that everyone everyone in the United States dies from stroke there that's number three and what's number two cancer heart disease cancer and Stroke so here and here Derek OH took an eye out there so there's a tendency and I would imagine some of you experienced this if you have an MS diagnosis for everything in your life that comes up gets blamed on multiple sclerosis and that that can be dangerous so you can have other other health issues by Roy problems you know diabetes b12 deficiency heart conditions can all be things that can contribute to fatigue and multiple sclerosis and obviously are not managed the same way I love this cartoon so the doctor says looks in his ear and says could be anything this is the way to general practitioner so we would like for you to have a good primary care doctor as much as Shepherd wants to be the one-stop shop for everything with MS the one thing that we don't do is primary care I always tell people if your neurologist is your primary care physician you have a really bad primary care physician you don't want us to be your primary care doctor so you really should have an intern or a family practitioner for women sometimes the GYN can be that the primary care doc but just to do all the routine health maintenance things that you know the the colonoscopies the you know the mammograms the four guys prostate checks because again ms typically does not kill people it's heart disease cancer and Stroke so you if you're here tonight I know you're putting a lot of effort into managing your ms and doing the best you can make sure you balance it out by taking care of the the other part of your of your health thank you guys

Channel: Multiple Sclerosis Foundation

Views: 103,857

Rating: 4.8911705 out of 5

Keywords: Ben Thrower, Fatigue, MS, MSF, Multiple Sclerosis Foundation, MSFocus, Multiple Sclerosis

Id: s2hxb5vCN74

Length: 39min 54sec (2394 seconds)

Published: Mon Mar 14 2016