Fatigue and Transverse Myelitis: A Daily Fight With Exhaustion

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One of the most common issues we hear about in our practice is fatigue.

“Doctor, by 10 am I am done for the day.”

“I don’t have the energy to do what needs to be done.”

“After work and on weekends, I just have to sleep.”

Fatigue is a pervasive issue in individuals who have been diagnosed with transverse myelitis and other rare neuroimmune diseases and often is responsible for large changes in lifestyle, family time and work schedules. It can be one of the most disabling issues that patients deal with, yet is often not addressed in an aggressive fashion. At our clinics in Dallas we take a three-step approach to dealing with fatigue.

  1. Understand the causes of fatigue in each individual (they are variable, but a few are most common).
  2. Directly deal with the underlying cause.
  3. Treat symptomatically if the underlying cause cannot be identified or treated.

What causes fatigue? A person’s energy level can be thought of like a household budget. Each person has a certain amount of money to spend in a day (their budget). Once the money is spent, that’s it – you are out of energy for the day, or you have to ‘borrow’, like using a credit card with a high interest rate (at some point you have to pay it back with a penalty). There are two ways to improve your spending: increase your income or cut unnecessary spending!

Why do patients afflicted with transverse myelitis ‘spend’ their energy money so quickly relative to other people? If a person’s walking or balance was affected by the myelitis, then each step – each and every step – COSTS MORE. Just getting dressed in the morning, one can ‘spend’ the equivalent amount of energy that another person would use in half a day! Thus, by mid morning, our patients may be out of energy funds! Thinking about walking is exhausting and the rest of the world takes it for granted! Hence, we look at each patient to determine why one is running out of energy too soon in the day. Here are the most common causes:

  1. Disorganized, too little or interrupted sleep (you need 8 uninterrupted hours per night). Getting up to go to the bathroom, snoring, disordered breathing, untreated nighttime pain, disruptive bed partner, annoying pets, late nights are all a problem!!
  2. Poor walking mechanics cost you more energy! Why did the physical therapist yell at you to stand straight and move each leg slowly and purposefully? Because bad mechanics may allow you to go quicker, but costs a lot of energy over the long run. WEAR THAT AFO if you need it! The brace makes walking “energy” cost less, hence you have more energy later!
  3. Medication side effects. Look to see if your medication for pain or spasticity is actually affecting fatigue and consider a trial of a different medication or treatment option
  4. Depression. Low mood can present in a lot of ways, including a sense of fatigue. Discuss this potential with your care providers.
  5. Unnecessary steps. Perhaps you should put your clothes out the night before, instead of looping your bedroom twice, just to get dressed in the morning!
  6. Underlying medical issue. Checking thyroid, B12 level and/or iron level may be indicated. These types of concerns should be discussed with your health care provider.

Recognize that a lack of energy doesn’t just make you feel bad, but has been associated with lower scores on cognitive assessments (documented by our very own Dr. Lana Harder in research studies). So how do you fix it? Ensure that #1-4 above are examined and treated if necessary. Your energy budget can be increased with better sleep, better diet and regular exercise. While exercise is an ‘energy expenditure’, over the long run it pays dividends and increases your budget!

In the end, fatigue is common, but treatable. The key is understanding the underlying cause and developing a personalized approach to managing it!

Ben-small~ Benjamin M. Greenberg, MD, MHS