What is it?
By Revere (Rip) Kinkel MD
Director of the UCSD Multiple Sclerosis Program
Fatigue associated with MS is one of the most complex symptoms to evaluate and treat. There are many reasons for this complexity but the ubiquitous experience of fatigue tops the list. How many of us with or without MS have NEVER experienced fatigue? Probably no one on earth. It seems that every peak and valley we achieve in life is accompanied by fatigue; when we are down and ill we experience fatigue, and when we reach the pinnacle of success and happiness our exuberance overwhelms us and leaves us fatigued. I once read that fatigue is the most common complaint of people presenting to their primary care physician. If fatigue is so universal it stands to reason that we can not all be describing the same symptom, and yet we use the same word for all our complaints: fatigue. It is said that the experience of fatigue in people with MS is qualitatively similar to the usual experience of fatigue but differs quantitatively in terms of the persistence and severity of the fatigue. While this is true, it still does not help with the evaluation and management of fatigue when it persistently interferes with your life.
So how do MS specialists help you evaluate and manage your fatigue under these circumstances? This topic is so complex that it is best for you to remember 5 important rules to help you over time:
1. Fatigue in people with MS is usually multifactorial. This means that fatigue is usually caused by a multitude of related or unrelated processes, not all of which are directly or even indirectly related to your MS. For instance, the fatigue may be 50 % caused by depression, 25 % caused by sleep disruption from chronic low back pain, 10 % caused by medication and 15 % caused by the direct effects of MS on the brain ( what we call primary MS related fatigue). It is the job of your MS specialist to help you figure out what factors are contributing to your fatigue and how to best treat it. In the example provided, treatment of the patient’s depression, elimination of the offending medication and improvement in sleep could go a long way towards improving the complaint of fatigue. On the other hand treatment with amantadine or modafinil for primary MS related fatigue would probably have little lasting benefit.
2. Fatigue means different things to different people. To some people fatigue means malaise or lassitude. To others it means the experience of being excessively sleepy during the day. Some are describing the experience of exertional weakness or mental fog or both. And some are describing a combination of fatigue experiences. It helps to be very specific when describing your complaint of fatigue. If fatigue means you are dragging your right leg after walking 100 feet and this requires you to rest before continuing, treatment may include a drug like Ampyra to improve electrical conduction in your nervous system. If fatigue means you wake up feeling poorly rested and find yourself falling asleep easily during the day, then it is far more appropriate to assess your sleep quality to direct your treatment.
3. The causes of fatigue will change over time and must be re-evaluated frequently. This is probably obvious, but requires stating explicitly. I see many people with MS who benefited from amantadine or modafinil early in the course of their MS but eventually find that it no longer works or doesn’t work again when restarted. As you get older there are more and more opportunities for problems to develop that can contribute to fatigue. These may be unavoidable problems like other medical conditions (hypothyroidism as an example) or the addition of medications that cause fatigue. The list of medications causing or worsening fatigue is almost endless and one of the main reasons your MS specialist must continually reassess your need for certain medications.
4. There is never one treatment for fatigue. Treatment requires a multidimensional approach. If you expect to take a pill and eliminate your fatigue, you will be disappointed. Even in circumstances where the cause of fatigue is known and curable-- for instance, hypothyroidism--returning to normal after curing the hypothyroidism will require dietary modifications for the weight gain and an exercise program for the deconditioning. This is even more essential for chronic neurological problems like MS. Treatment should initially focus on the most treatable causes of your fatigue. This may include evaluation and management of treatable conditions (e.g. anemia), the elimination of unnecessary medications, improvement in sleep and treatment of depression. This should be accompanied by dietary modifications and a structured graduated exercise program with or without work and leisure activity adjustments during the day. People with MS should be regularly reassessed with the potential addition of medications to treat primary MS related fatigue, beginning with amantadine and considering modafinil or other stimulants if the amantadine is not effective.
5. Establish meaningful goals for treating your fatigue. It is rare that we totally eliminate fatigue in MS, so it is important to establish specific goals with your MS specialist and your family. This will help guide treatment recommendations.
Director of the UCSD Multiple Sclerosis Program
Fatigue associated with MS is one of the most complex symptoms to evaluate and treat. There are many reasons for this complexity but the ubiquitous experience of fatigue tops the list. How many of us with or without MS have NEVER experienced fatigue? Probably no one on earth. It seems that every peak and valley we achieve in life is accompanied by fatigue; when we are down and ill we experience fatigue, and when we reach the pinnacle of success and happiness our exuberance overwhelms us and leaves us fatigued. I once read that fatigue is the most common complaint of people presenting to their primary care physician. If fatigue is so universal it stands to reason that we can not all be describing the same symptom, and yet we use the same word for all our complaints: fatigue. It is said that the experience of fatigue in people with MS is qualitatively similar to the usual experience of fatigue but differs quantitatively in terms of the persistence and severity of the fatigue. While this is true, it still does not help with the evaluation and management of fatigue when it persistently interferes with your life.
So how do MS specialists help you evaluate and manage your fatigue under these circumstances? This topic is so complex that it is best for you to remember 5 important rules to help you over time:
1. Fatigue in people with MS is usually multifactorial. This means that fatigue is usually caused by a multitude of related or unrelated processes, not all of which are directly or even indirectly related to your MS. For instance, the fatigue may be 50 % caused by depression, 25 % caused by sleep disruption from chronic low back pain, 10 % caused by medication and 15 % caused by the direct effects of MS on the brain ( what we call primary MS related fatigue). It is the job of your MS specialist to help you figure out what factors are contributing to your fatigue and how to best treat it. In the example provided, treatment of the patient’s depression, elimination of the offending medication and improvement in sleep could go a long way towards improving the complaint of fatigue. On the other hand treatment with amantadine or modafinil for primary MS related fatigue would probably have little lasting benefit.
2. Fatigue means different things to different people. To some people fatigue means malaise or lassitude. To others it means the experience of being excessively sleepy during the day. Some are describing the experience of exertional weakness or mental fog or both. And some are describing a combination of fatigue experiences. It helps to be very specific when describing your complaint of fatigue. If fatigue means you are dragging your right leg after walking 100 feet and this requires you to rest before continuing, treatment may include a drug like Ampyra to improve electrical conduction in your nervous system. If fatigue means you wake up feeling poorly rested and find yourself falling asleep easily during the day, then it is far more appropriate to assess your sleep quality to direct your treatment.
3. The causes of fatigue will change over time and must be re-evaluated frequently. This is probably obvious, but requires stating explicitly. I see many people with MS who benefited from amantadine or modafinil early in the course of their MS but eventually find that it no longer works or doesn’t work again when restarted. As you get older there are more and more opportunities for problems to develop that can contribute to fatigue. These may be unavoidable problems like other medical conditions (hypothyroidism as an example) or the addition of medications that cause fatigue. The list of medications causing or worsening fatigue is almost endless and one of the main reasons your MS specialist must continually reassess your need for certain medications.
4. There is never one treatment for fatigue. Treatment requires a multidimensional approach. If you expect to take a pill and eliminate your fatigue, you will be disappointed. Even in circumstances where the cause of fatigue is known and curable-- for instance, hypothyroidism--returning to normal after curing the hypothyroidism will require dietary modifications for the weight gain and an exercise program for the deconditioning. This is even more essential for chronic neurological problems like MS. Treatment should initially focus on the most treatable causes of your fatigue. This may include evaluation and management of treatable conditions (e.g. anemia), the elimination of unnecessary medications, improvement in sleep and treatment of depression. This should be accompanied by dietary modifications and a structured graduated exercise program with or without work and leisure activity adjustments during the day. People with MS should be regularly reassessed with the potential addition of medications to treat primary MS related fatigue, beginning with amantadine and considering modafinil or other stimulants if the amantadine is not effective.
5. Establish meaningful goals for treating your fatigue. It is rare that we totally eliminate fatigue in MS, so it is important to establish specific goals with your MS specialist and your family. This will help guide treatment recommendations.
Fatigue
by Lori Kostich M.S. CCC-SLP, MSCS
One of the biggest impediments to getting out and about for persons with Multiple Sclerosis is fatigue. Yes, fatigue, that bone weary, heavy, melt into the floor feeling that makes you want to stop doing what you’re doing and sit (or sleep). It affects everyone differently. It makes anything requiring thought or motion more difficult (which is everything). It doesn’t matter if you are on your own or you have family and friends to help- fatigue is something that needs to be managed for you to be at your best. So let me ask you …
Are you tired?
If you are, keep reading.
“My fatigue is high”
When you go to your medical professional and make this statement they are going to try to tease out whether it is truly MS related fatigue, or something else. They are going to ask how well you are sleeping, and how many hours you are sleeping. They may ask about your sleep schedule- some people who are no longer working can get their sleep cycles turned around. So even if they are getting enough sleep, but on an odd schedule, it can leave them feeling tired. They may ask about what you are doing before you try to go to sleep. They may ask if you have sleep apnea. They will ask if you have a history of depression. They will ask if pain is keeping you up at night. You see where I am going with this. Just because you are feeling exhausted during the day does not automatically mean it is MS related fatigue, it could just mean you are not getting enough sleep.
Getting to Sleep
Getting to sleep can be a challenge for many of us- MS or not. We worry, we think, and we plan. We just lay there. Here are some ideas…
Here are some sites that I think have good information about going to sleep…
http://www.helpguide.org/articles/sleep/how-to-sleep-better.htm
http://www.nhs.uk/Livewell/insomnia/Pages/bedtimeritual.aspx
And if you are losing sleep because your kids can’t go to sleep…
http://www.parenting.com/article/how-to-get-your-child-to-sleep-really
by Lori Kostich M.S. CCC-SLP, MSCS
One of the biggest impediments to getting out and about for persons with Multiple Sclerosis is fatigue. Yes, fatigue, that bone weary, heavy, melt into the floor feeling that makes you want to stop doing what you’re doing and sit (or sleep). It affects everyone differently. It makes anything requiring thought or motion more difficult (which is everything). It doesn’t matter if you are on your own or you have family and friends to help- fatigue is something that needs to be managed for you to be at your best. So let me ask you …
Are you tired?
If you are, keep reading.
“My fatigue is high”
When you go to your medical professional and make this statement they are going to try to tease out whether it is truly MS related fatigue, or something else. They are going to ask how well you are sleeping, and how many hours you are sleeping. They may ask about your sleep schedule- some people who are no longer working can get their sleep cycles turned around. So even if they are getting enough sleep, but on an odd schedule, it can leave them feeling tired. They may ask about what you are doing before you try to go to sleep. They may ask if you have sleep apnea. They will ask if you have a history of depression. They will ask if pain is keeping you up at night. You see where I am going with this. Just because you are feeling exhausted during the day does not automatically mean it is MS related fatigue, it could just mean you are not getting enough sleep.
Getting to Sleep
Getting to sleep can be a challenge for many of us- MS or not. We worry, we think, and we plan. We just lay there. Here are some ideas…
- Go to bed at the same time, all the time, even on weekends. It will help regulate your sleep/wake cycle.
- Avoid lying down and dozing after dinner. Dozing will make it harder to go to sleep later. Get up and do some stretching after dinner. Get up and go outside. Get up and get a puzzle out. Play cards or a board game.
- Develop a ritual or routine. Do the same things in the same order every evening. This will help your body know it is time to sleep.
- Don’t go to sleep with the TV on. This is for two reasons. The first reason is that your bedroom should be dark while you are trying to sleep- so no additional lights. The second reason is (and this is just a theory of mine), beginning at about 1 o’clock in the morning, the television is trying to wake you up. All of those telemarketers selling stuff are literally shouting at you in the middle of the night to wake you up and get you to buy their stuff. Don’t fall victim to telemarketers- turn the TV off before you go to bed.
- Avoid liquids after 6:00 PM. This is tricky. You need to drink fluids for your body to function optimally. Yet I know some of you are not drinking as much as you probably need to due to bladder urgency. If this is you, remember you should optimally be drinking 64 ounces of fluid (8 almost full coffee mugs) per day. If you are worried about liquid intake and sleep, load those fluids early in the day- the first 32 ounces by noon, the second 32 ounces by 5:00. Then you have the chance of getting all of the fluid out of your system before you try to go to sleep.
- Try to not be really busy before bed. Being really productive can make it harder to relax when the time comes to go to bed.
Here are some sites that I think have good information about going to sleep…
http://www.helpguide.org/articles/sleep/how-to-sleep-better.htm
http://www.nhs.uk/Livewell/insomnia/Pages/bedtimeritual.aspx
And if you are losing sleep because your kids can’t go to sleep…
http://www.parenting.com/article/how-to-get-your-child-to-sleep-really
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Is coughing keeping you awake at night and causing fatigue?
Written by Lori Ann Kostich M.S. CCC-SLP
Mandell Center for Multiple Sclerosis Treatment and Research
“I don’t cough when I eat… I cough when I sleep”
This occasionally happens to me. As you know (because you’ve already read the part of this website on swallowing), Speech Language Pathologists (SLPs) treat swallowing issues. So when a patient says “I cough…” for any reason, it usually means an automatic referral to the SLP. When a patient says to me “I cough, but only when I sleep”, I do a swallow evaluation just to make sure there is nothing obviously wrong inside that persons mouth, or when they swallow food. Then I ask if the patient has a breathing machine (CPAP, VPAP- one that you wear at night and usually has a mask). And about 75% of the time the patient who “chokes” in the night, will say to me “Yes, I have one of those, but it is too loud and it keeps my significant other awake, so I don’t use it”. Or they say, “The mask is uncomfortable, so I don’t use it”. Or they say, “It’s broken”.
At this point in my evaluation, I usually sigh.
Then I ask the following questions:
1. How long have you had the machine and do you remember which physician ordered it for you?
2. Why did the physician order it for you?
To that second question, I often get responses similar to “I wasn’t breathing during the night”, or “I stopped breathing too much during the night”, or straight up “I was diagnosed with sleep apnea”.
So let’s go back to the issue of fatigue. If you have a breathing machine and are not using it, it might not be fatigue you are feeling during the day. You might just be tired because you are not getting good rest during the night.
Here is a link that talks in more detail about sleep apnea.
http://www.sleepeducation.com/essentials-in-sleep/sleep-apnea
In this situation then, what can be changed to make you feel better? Consider using that machine again. If you haven’t used it for a very long time, you might want to take it back to the physician to see if the last setting you were using it at is still correct. If it’s broken, definitely take it back to the physician. When you are at the physician’s, confess to the reason you stopped using it in the first place. If the mask was uncomfortable, there might be another option. If it was keeping your significant other awake, have a conversation with your significant other. If use of this machine is important to your ongoing health, then you need to use it. Even if it is keeping them awake, you still need to use it. And you need to have a conversation about some kind of compromise.
When I speak to significant others of patients who have breathing machines, however, usually they ae very supportive, saying the noise of the machine is a little like white noise, and easy to get used to. Sometime, they also say the noise of the machine is better than listening to the patient snore, stop breathing, choke, snore, etc. all night. So, every couple is different… have that conversation.
So, this is one more issue that needs to be thought through when a patient says they are “fatigued”
Is this something you can change?
Written by Lori Ann Kostich M.S. CCC-SLP
Mandell Center for Multiple Sclerosis Treatment and Research
“I don’t cough when I eat… I cough when I sleep”
This occasionally happens to me. As you know (because you’ve already read the part of this website on swallowing), Speech Language Pathologists (SLPs) treat swallowing issues. So when a patient says “I cough…” for any reason, it usually means an automatic referral to the SLP. When a patient says to me “I cough, but only when I sleep”, I do a swallow evaluation just to make sure there is nothing obviously wrong inside that persons mouth, or when they swallow food. Then I ask if the patient has a breathing machine (CPAP, VPAP- one that you wear at night and usually has a mask). And about 75% of the time the patient who “chokes” in the night, will say to me “Yes, I have one of those, but it is too loud and it keeps my significant other awake, so I don’t use it”. Or they say, “The mask is uncomfortable, so I don’t use it”. Or they say, “It’s broken”.
At this point in my evaluation, I usually sigh.
Then I ask the following questions:
1. How long have you had the machine and do you remember which physician ordered it for you?
2. Why did the physician order it for you?
To that second question, I often get responses similar to “I wasn’t breathing during the night”, or “I stopped breathing too much during the night”, or straight up “I was diagnosed with sleep apnea”.
So let’s go back to the issue of fatigue. If you have a breathing machine and are not using it, it might not be fatigue you are feeling during the day. You might just be tired because you are not getting good rest during the night.
Here is a link that talks in more detail about sleep apnea.
http://www.sleepeducation.com/essentials-in-sleep/sleep-apnea
In this situation then, what can be changed to make you feel better? Consider using that machine again. If you haven’t used it for a very long time, you might want to take it back to the physician to see if the last setting you were using it at is still correct. If it’s broken, definitely take it back to the physician. When you are at the physician’s, confess to the reason you stopped using it in the first place. If the mask was uncomfortable, there might be another option. If it was keeping your significant other awake, have a conversation with your significant other. If use of this machine is important to your ongoing health, then you need to use it. Even if it is keeping them awake, you still need to use it. And you need to have a conversation about some kind of compromise.
When I speak to significant others of patients who have breathing machines, however, usually they ae very supportive, saying the noise of the machine is a little like white noise, and easy to get used to. Sometime, they also say the noise of the machine is better than listening to the patient snore, stop breathing, choke, snore, etc. all night. So, every couple is different… have that conversation.
So, this is one more issue that needs to be thought through when a patient says they are “fatigued”
Is this something you can change?
How do I manage it?
Read this blog by Donn (a person with MS) about how he is combating fatigue CLICK HERE
Read this blog by Donn (a person with MS) about how he is combating fatigue CLICK HERE
Other ways to manage fatigue:
- Healthy Eating! Here is a great site from the American Diabetes Association to help get you started: CLICK HERE
- Yoga has been found to help patients fight fatigue and to build strength to help them manage other symptoms from MS, recovering from surgery, etc. Here is a video and some good links for yoga:
- Youcandoityogaforms.com
- Find an adaptive yoga teacher
- A good overall article explaining why yoga is beneficial for MS
- This gives a good overview of the styles and lots of quick resources.
- This is from MS Active Source (it gives a breakdown of how yoga helps each symptom and a 3-level DVD set, online videos of poses too)
- A great book and the author's website
- A chair yoga website where you can locate teachers
- Wonderful yoga teacher. My best recommendation for restorative yoga (also known as Yin yoga)
- This is a good article about using a chair for yoga
- Using Swimming to Manage Fatigue (click on the link below)
PLEASE NOTE: The medical information on this site is provided as an information resource only, and is not to be used or relied on for any diagnostic or treatment purposes. This information does not create any patient-physician relationship, and should not be used as a substitute for professional diagnosis and treatment. Please consult your health care provider before making any healthcare decisions or for guidance about a specific medical condition.
