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.
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