Levels of MS Fatigue and How I Cope with Them

I never knew fatigue until I experienced it. Once I did, I realized how different it is from being tired.

I put a lot of effort into noticing when I start to feel fatigued so that I can do something before it gets out of hand. My goal is to manage it, prevent consequences to my daily activities, and preclude exacerbations.  I know fatigue may be experienced differently by other people, so I can only describe my experience as I’ve had so far. This description is non-scientific and for illustrative purposes only.

Level 0: No Fatigue at all.  This is especially exciting to notice after I’ve been fatigued. Realizing fatigue is gone is a glorious feeling. I might feel tired, but it is not fatigue.  Exercise and daily activities may make muscles sore or make me want to sleep, but the effort it takes to move is inconsequential. I will wake after sleeping through the night full of energy.

Level 1: There’s the mild level of fatigue where I don’t really notice it until I stop moving. Movements take more energy than they should. Exercising moderately, budgeting energy, and rest helps me recharge.

Level 2:  It’s a full body exhaustion that I can push through.  I know I’ll pay for it if I ignore it, so I take the evening off from household tasks. Take a B-12 shot or B supplements. Exercise moderately.  It’s counterintuitive, but exercise helps with fatigue.  I’ve found that an easy workout clears my head, helps me sleep, and leads to less fatigue later.  This is only true if my fatigue level when working out is less than Level 3. A good rule of thumb is that if after 5-10 minutes of exercise I still feel fatigued, I’ll stop. Some exercise is better than none.

Level 3: There’s the fatigue during the day when I push through a lesser level fatigue and suddenly realize I need to lie down immediately.  I can push through this, but there will definitely be consequences.  A price I’ve paid in the past is not being able to get out of bed the next day.  At this point only low level exercise like a mellow walk or yoga practice will help. Any rigorous exercise will increase my fatigue, and I may take longer to resume normal daily life.

Level 4: There’s the morning fatigue where I will myself to take a shower and need to be horizontal afterward in order to recuperate from the taxing effort it took to shower. When I feel this way, I’ve learned that taking the day off is necessary to allow me to resume my regular schedule the next day. Every movement feels like I’m trying to run through water up to my neck.

Level 5: This level of fatigue is where I can’t get out of bed. No amount of will can override this fatigue. It may take more than one day to recover from this, and it may be indicative of an exacerbation. I try to avoid this at all costs, and I will do what is necessary to recover because there really is no choice. The body overrides any will I may have. This extreme level of fatigue demands that I stay home, nap, limit energy exertion and practice pausing from life for the day.  See my post on Learning to Pause for more on this. 

Paying attention to the signals my body sends me and discerning between when I can continue or when I need to stop has been an art to learn. It requires constant adaptation and subjective assessment. I’ve been very fortunate that respecting my body’s signals and adapting my behavior has been successful for me so far.