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Multiple Sclerosis Centers of Excellence

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Multiple Sclerosis-Related Fatigue: Swimming in a Fur Coat

Christopher Hollen, MD

“Like swimming in a fur coat”, “wading through quicksand”, and “being under a lead blanket” are ways people with MS have tried to describe their fatigue. Fatigue can be a tremendous burden in people with MS. It is not only the most common symptom of MS but also one of the single biggest causes of disability and decreased quality of life. To make matters worse, fatigue is one of the most difficult symptoms to communicate to others. Fatigue is a feeling, a lack of energy and motivation, an invisible symptom that can’t be detected on a brain scan, blood test, or physical exam.

The specific cause of fatigue in MS is not entirely clear but likely comes from multiple sources. The inflammation that causes lesions in MS can cause chemicals to be released in the brain (cytokines) that may cause fatigue. Damage to the brain’s neurons likely also contributes. Neurons transmit information to the body. When damage builds up over time, this can cause impaired connections, interrupting the flow of information. Often fatigue from MS is worsened by warm weather or vigorous exercise that raise body temperature.

It’s important to remember that there are also secondary causes of fatigue that are very common, results of having MS. Many symptoms of MS negatively affect sleep that in turn makes fatigue worse. Anxiety, spasticity, pain, and urination problems can reduce the amount and quality of sleep in a person with MS. These symptoms may be modifiable with treatment. If experiencing fatigue, your provider may check for other health problems that can cause fatigue such as low thyroid hormone, sleep apnea, diabetes, anemia, and depression. Sometimes a sleep study may be helpful to make sure that you are maximizing the benefits of sleep.

There are medications that may help with fatigue for some people with MS. These should be considered, along with controlling the secondary causes of fatigue. However, the evidence that these medications work is relatively weak and the benefit can be fairly modest. You may want to discuss with your provider whether these medications are right for you, based on consideration of potential benefits and side effects. For many, a combination of medications and other methods of treatment such as physical therapy, exercise, and diet changes can make a big difference. Fortunately, many VA hospitals have specialized providers and therapists who have access to cutting-edge techniques that may be able to help.

Effective communication between the physician and patient is required to develop an individualized plan for managing a person’s fatigue and overall health. Sometimes there may be difficulty expressing the significance of fatigue a person is experiencing in the setting of a brief visit with their provider when other issues may take precedence. If experiencing fatigue, here are a few things you can consider before talking to your provider about your fatigue.

  • Write down the most important issues you want to discuss with your provider to help guide your visit.
  • Journal your fatigue. When do you have the most energy? When do you feel really drained? What activities are absolutely necessary for you to handle? Which of your activities could be delegated to others?
  • Think about your diet habits and if fatigue has impacted your eating habits. Start with simple substitutions – like replacing packaged snacks with nuts, seeds, or whole fruits or using beans and lentils which provide protein without saturated fats. Aim to make your plate more colorful with fruits and vegetables that provide antioxidants.
  • A brief amount of regular exercise can make a big difference. Skilled therapists can help guide you on creating a reasonable plan and goal.
  • Discuss with your provider whether any of your medications could be causing or contributing to your fatigue. Some medications that can cause sedation are baclofen, tizanidine, or gabapentin. Your provider may consider changing a dose or stopping a medicine if it doesn’t seem to be helping.
  • Maximize quality of sleep through sleep hygiene. Avoid drinking water just before bed and schedule a trip to the bathroom prior to sleeping. Avoid computer or TV screens before or while you sleep. If you smoke you should try to quit but until you do, avoid cigarettes and alcohol in the 6 hours prior to bed.

Fatigue is a complex issue with no one-size-fits-all approach to solving it, but sometimes simple changes can have a big impact. The first step in getting better is taking an honest and thorough personal inventory on lifestyle changes that are feasible. The weight and challenge of swimming in the fur coat of MS-related fatigue can improve but it often requires a multi-pronged treatment approach and should be coordinated with help from your primary care and MS providers.