Beyond Just Tired: Figuring Out MS-Related Fatigue

Why is fatigue often so hard for friends and family to understand?
Oftentimes fatigue doesn't correlate with physical disability, so it's something that people on the outside are not really able to observe.  We often think of fatigue as being tiredness.  So people might think: "Oh, why don't you just take a nap and get over it?"  Unless you've really experienced true fatigue itself, it's very difficult to really understand what that concept means.

Is MS-related fatigue sometimes under-recognized by health professionals?
Most definitely; probably more so in women than in men.  It's often attributed to; overworking or to stress, so people get patted on the back and are told to take it easy and things will get better.

I think that the general primary care doctor especially is not very attuned to the impact that fatigue plays with MS.  But even some neurologists aren't attuned to it.

How can people living with MS manage fatigue?
I highly encourage vigorous physical activity, as long as people can tolerate it, which seems kind of counterintuitive.  But getting people moving with exercise and getting some element of aerobic activity in their life is very important.  For people who do become a little symptomatic if they overheat, I have them put cold towels around their neck or make sure that the room that they do their aerobics class in, or their gym, is air conditioned, or that they have a fan on them.

If people do become symptomatic after working out because they've overheated, immediately cooling their bodies down afterwards can quiet those symptoms.  They can just get into a cool shower or put ice packs on their neck or their wrists.

The intensity of the exercise should be tailored to what a patient is able to do.  If they have limited range of motion or they are very physically disabled, then we're talking about a totally different exercise program than one for somebody who has absolutely no problem with their arms or legs.

But even somebody who is confined to a wheelchair often has a lot of strength in their upper extremities, and you can still get your heart rate up by using your upper extremities.  There are just some modifications that need to be made, but there is usually something that you can find that can help people out in terms of exercise.

Are there any other behavioural strategies for avoiding or minimizing fatigue?
If it's at all possible, I recommend that people incorporate a little bit of a rest time sometime in the afternoon.  I think that really helps a lot with rejuvenating and increasing energy levels and decreasing fatigue for the remainder of the day.

Are there medications available to treat fatigue?
We have a few.  The one that has probably been used the longest is amantadine.  It's an antiviral medication, actually.  We use it for many diseases, including Parkinson disease. Nobody knows the how amantadine works in terms of treating fatigue and not everyone experiences the full benefit of it.

Some people have used stimulants such as Ritalin, but psycho-stimulants often have unpleasant side effects of nervousness, anxiety and jitteriness, and insomnia, which can be a problem in ultimately exacerbating fatigue.

More recently, we've added modafinil, which is also called Provigil.  It was originally Food and Drug Administration-approved for the sleeping disorder narcolepsy.  There have been several studies that have shown its benefit in treating MS fatigue.  It has many fewer side effects than other drugs, though a small percentage of people feel a little jitteriness from it . The most common side effects are headache and some appetite suppression.

What is your advice to someone who has MS and fatigue?
They should really be aggressive about having their fatigue treated.  People often feel like fatigue is something that's in their control, and they sometimes don't even bring it up to their physician.  But it's a real and sometimes very disabling symptom.  It's not in their head.  And there is really a lot that can be done for it.