a man is lethargic ont he sofa with spiderwebs nmo fatigue not tired

I'm Not Tired, I'm Fatigued

It's 2022. The world and the people in it seem busier than ever. At a time of "accessibility" and "ease of access", most of us are weighed down with a plethora of miscellaneous tasks that overwhelm even the most energetic, able-bodied person. For a person living with NMOSD, can you imagine how draining this must be?

The difference between being tired and fatigue

It drives me nuts when I tell a person I'm fatigued, and they simply assume that I'm just tired and need to rest a little. Well, let me just stop you right there. Tired and fatigued are NOT the same thing. Tiredness is usually caused due to too much work or lack of sleep.1 Fatigue is often used as a synonym for tiredness, but there is a difference between the two. Unlike tiredness, you can’t cure fatigue. 1 The symptoms of fatigue can only be managed.

NMOSD and fatigue, what's the correlation?

For the most part, I can carry on with my day with some spurts of fatigue here and there but there are "those" days that I simply cannot. I have found difficulty trying to express this to others. Even worse, I've explained this to my doctors, and I have noticed that it seems to be difficult for them to treat or they don't know how. However, let's look at the facts. Recently, it was reported that chronic fatigue was equally prevalent in patients with NMO (76.9%) and MS (70.9%). Another study showed that the incidence of fatigue was higher in patients with NMO (64%), compared to healthy controls 2. In summary, it is highly likely that if you have NMOSD, you also have fatigue.

We can overcome this

Managing the symptoms of fatigue are easier said than done. Most often, you may require some form of medical intervention. Some ways to manage include:

  • Medications: Some problems associated with chronic fatigue syndrome can be improved with either prescription or over-the-counter medication to include medications for depression, pain, orthostatic intolerance, etc.
  • 3

  • Therapy: Many people with chronic fatigue syndrome benefit from counseling, managing depression, addressing sleep problems and exercise.3

For me, laying down and letting the entire day pass me by is just part of my normal routine on the days when I'm consumed with fatigued and that's OK.

Take advantage of the good days

It's very difficult to manage the NMO fatigue. There's no right or wrong way to do it. Simply do what work best for you. That could be sitting around all day in pjs or taking medication to get that boost. Either way, what works for you is BEST for you. I don't always have good days but when I do, I do it in style! I love doing my makeup. I loved it pre-NMOSD and this hasn't changed however, what used to take me only 30 mins can easily turn into an all-day project due to NMO fatigue.

I personally love to take advantage of the days when I'm "feeling it". I'll usually put on a full face of makeup, take some pictures, make a post for social media and relax the day away when I'm done. In that moment, I am the happiest person alive! Having just a moment of relief from the fatigue makes me feel like myself again. As I said, there aren't too many days like this. Any chance I can get to cherish that moment, I do. Remember, we are not lazy, we are fatigued. There's a difference.

My personal philosophy

"I'm living in the moment, with purpose. Although this is just something we must learn to live with, even fatigue cannot stop us from thriving though NMOSD."

Do you relate to having fatigue?
Share your story, help others feel a little less alone

By providing your email address, you are agreeing to our privacy policy.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Neuromyelitis-Optica.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Join the conversation

Please read our rules before commenting.