Transcript of Video on Energy Management
One of the most common symptoms for patients with multiple sclerosis is fatigue. Though it varies from person to person, fatigue can seriously interfere with normal activities, even when the other symptoms of MS are under control. Join us as we take a look at some helpful techniques for dealing with fatigue.
Transcript:
DAVID R. MARKS, MD:
Hi, and welcome to our webcast. I'm Dr. David Marks. Fatigue is one of the most common symptoms in multiple sclerosis It can vary from person to person, but it can seriously interfere with normal activities, even when other symptoms of MS are under control. Today we'll take a look at some techniques for dealing with fatigue.
Joining me are two experts: First, a real expert is a patient, Rick Sommers. He is an MS patient here in New York City. Thanks for being here.
RICK SOMMERS:
David, nice to be here. Thank you.
DAVID R. MARKS, MD:
Next to him, from the physician side, we have a neurologist, Dr. Jeffrey Greenstein, and he's from Temple University. Thanks for being here.
DR. JEFFREY GREENSTEIN:
A pleasure, good to be here.
DAVID R. MARKS, MD:
How common is fatigue in MS?
DR. JEFFREY GREENSTEIN:
It's actually very common. It occurs in almost as many as 90 percent of people with MS. It varies a lot from day to day, and it can be a considerable disabling feature of MS.
DAVID R. MARKS, MD:
Now, Rick, you look very healthy. You look great. Do you feel tired at all?
RICK SOMMERS:
Yeah. I think fatigue, in MS that is the one thing people will often say you'd never know, because unless you're walking with an apparatus you look great, you seem like you're functioning, you seem like you're getting along, but I, more often than not, deal with fatigue on a daily basis and have had to find ways to manage it.
DAVID R. MARKS, MD: Why does this occur?
DR. JEFFREY GREENSTEIN:
We don't really know exactly why fatigue occurs in MS. Some people think it may be because of the inflammation that exists in the brain, but it quite equally could be because nerve damage has occurred and pathways in the brain which keep us alert and keep us activated. So there are two actual aspects to fatigue. One is more of a mental fatigue that occurs, and the other is a physical fatigue where people's muscles may give out on them, and that's particularly common. For example, some people walk very far and start limping because their leg will give out. So there are two components to fatigue that we have to bear in mind.
DAVID R. MARKS, MD:
Now, Rick, you're here nodding your head, both for the mental and the physical. Give us some examples of how it interferes with your life.
RICK SOMMERS:
Well, basically, just on the job I am tired. If I am out late at night, my friends will see me yawning at the table, and it's not because the conversation isn't entertaining. It's because I may have been up early, and it's hard for me to keep up. I'm not going to lie. Life in New York City is especially fatiguing, because everything is a production. And then when you add on top of it the stresses and strains of everyday life, and then a chronic disease, it's enough to wear you out. I find, as I said, you really need to pace yourself and you have to redefine what your limits are.
DAVID R. MARKS, MD:
How do you do that?
RICK SOMMERS:
Trial and error, basically. Before I was diagnosed, I ran the New York City Marathon, so I was in tip-top shape. I mean, things couldn't have been better in my body -- my pulse, my heartbeat, my lungs were in great shape. Years later, I find myself getting fatigued climbing the stairs, so I now know that I'm never going to run a marathon again. So I've had to kind of lower the bar and say, "I can't do what I used to be able to do." At first, psychologically, that's fatiguing, because you say to yourself, "But I always could do that. Why can't I do it now?" You get mentally tired because it's hard to let go of things that we so readily were able to do, we took for granted.
What I have done over the years, and it's taken a lot of work, is to lower that bar and to tell myself, "It's okay. I can't do what I used to be able to do, and just to do what I am able to do is more than a lot of people still do."
DAVID R. MARKS, MD: But are there techniques that you use to try to conserve your energy?
RICK SOMMERS:
I do work out. I don't run as -- I was going to say "as much." I don't run anymore, period, because it's just too hard on my legs. But I try and go to the gym and exercise on not a daily basis, but at least every other day. The most important things are your diet -- incredibly important, what kind of fuel you're putting in your body -- getting enough rest. There was just a study recently done that said Americans aren't getting the eight hours of sleep. I see both doctors probably nodding their heads as I say that. But you have to know that if you're tired, you don't stay up and watch Leno's monologue. You say, "I've got to just lower the bar and go to bed." I also find myself during the day -- and I work in a situation where there's a couch -- if I have to lie down for 20 minutes and catch one of those catnaps, I will do it.
DAVID R. MARKS, MD:
Are there any techniques that you recommend to your patients?
DR. JEFFREY GREENSTEIN:
Actually, you have mentioned some of them -- for example, energy conservation. Learning how to learn your limits. For example, if you go exercise, you probably know how long you can go without fatiguing, and normally what I recommend that people do is exercise until they get to that point or shortly before it, rest, and go back and exercise again, doing things earlier in the day, or the period of the day when you know you're going to have more energy, so you can pace yourself. You can conserve energy. You can use strategies. You can also adapt things at home, if you need to, to save the energy in whatever you do.
Likewise, we often recommend that people use adaptive devices if they have more problems, not because we want to take away the capacity of someone to walk or move, but we want them to conserve their energy. For example, someone may be perfectly good at walking, but they may have trouble when they go very far. That's the kind of time when you need to use strategy, to use a wheelchair to get where you want to go so that when you're there you have the energy to do something or enjoy whatever you want to go ahead and do.
DAVID R. MARKS, MD: Are there any medications that help?
DR. JEFFREY GREENSTEIN:
There are a number of medications that are available, and they should be discussed with physicians and, I think, given by prescription. They are relatively off-label in the sense that they're not primarily approved for use in fatigue in MS, but they have been shown to be effective. The first is a drug called amantadine, which was initially introduced for Parkinson's disease, but shown to be beneficial for energy in MS; and more recently, there's a newer drug called modafinil, which has been shown in a clinical trial in MS to be quite effective in helping deal with the issue of fatigue. The strategy needs to be mapped out as a team effort, in some respects. However, patients often come in and tell me what works for them, and that's the kind of thing that one needs to support and help people use.
RICK SOMMERS:
It really doesn't make a whole lot of difference unless you're getting enough rest to begin with, so if you know you need nine hours of sleep a night, then you have to make a concession, and if you know the alarm's going to go off at six in the morning, do the math and go back on your clock and figure out what time you're going to have to go to sleep to be able to function. We're not 18 years old and freshmen in college anymore where we can get by with just a few hours of sleep a night, especially if you're dealing with something that's chronic.