Life with MS

It seems to me that there is a disconnect or misunderstanding about MS fatigue on the part of healthcare practitioners and even in some members of the MS community. For me, MS fatigue has nothing to do with being tired. A nap does not address this level of fatigue and may not even be possible (I cannot seem to nap and never have unless I am sick with a fever). MS fatigue generally, once it hits, wipes me out for the rest of the day. There is muscle weakness. There may be cognitive effects. There is profound lethargy.

People often have a completely inadequate understanding of the difference between fatigue that affects all of us when we overdo for extended periods and MS fatigue. That first kind of fatigue needs rest, sleep, and refreshment. MS fatigue is not relieved by any of those things but is pervasive and prolonged and can be totally disabling.

As a young person living on a dairy farm, I had to help with the haying during the summer. My primary job was to haul full wagons of baled hay from the field to the barn and offload it. Each wagon had an average of 120 to 150 fifty-pound bales of hay per load. We pulled the tractor and wagon onto a cement pad at the back of the barn, turned on the elevator or conveyor and threw bales onto it to carry them into the hay mow and dump them off along the way. If the exterior temperature was 80 degrees, the temp on that cement pad was measurably 15-20 degrees warmer. The physical activity of throwing those fifty-pound bales off in that heat over the course of 15 minutes was extremely fatiguing.

That level of physical fatigue does not even come close to the intensity of MS fatigue, which is nonrecoverable and intense to a degree that is often not describable. I tell my husband that it feels like the “starch has gone out of my spine" or this is “knuckle-dragging fatigue” meaning I cannot keep my body erect. It is difficult or impossible to hold my body upright. I am not sleepy. I cannot nap. The intensity of this fatigue is profound beyond anything I had ever experienced prior to MS.

As a kid growing up on a farm, Whether it was getting up at 4 a.m. to do the milking or getting up at 2 a.m. to deliver a calf that would not clear the birth canal. The latter entailed hooking a loop around the forelegs of the calf while simultaneously pulling with the contractions, which often took two adults to provide enough strength of pressure to facilitate the birth over the course of the next hour. This is draining at best in a healthy and strong individual.

MS fatigue is an entirely different animal than fatigue that results from prolonged and strenuous activity. It is almost as if you are watching yourself from outside your body, but do not have the strength to respond to the simplest stimuli – hence, the term lassitude. This is in a totally different category than fatigue as the general population knows it. Questions that we are asked in healthcare visits are helpful to differentiate this lassitude from emotional fatigue that could be associated with depression or physical fatigue from work or deconditioning. MS fatigue has nothing to do with motivation. We can be motivated to the nth degree but our bodies do not cooperate. This is perhaps the most difficult symptom to convey to anyone who has not experienced it.

So, how is MS fatigue managed and prevented? It probably is the most difficult symptom of MS to treat and each individual responds differently to that treatment. Medications that are stimulants may be prescribed. Medications that prevent narcolepsy, which may be linked to certain sleep disorders, can help. These medications are not meant to be used every day and may lose their effectiveness if that practice is followed. They are generally most effective when taken only on the days where extra energy or mental alertness are most needed. For that reason, individuals who take them to facilitate the best outcomes in their work week should try to take a vacation from them on their days off or less taxing work days.

Lifestyle changes such as healthy eating, smoking cessation, and regular exercise can be helpful in preventing the worst of MS fatigue. I have found that being aware of my posture and staying erect helps me to breathe more fully and stave off the worst of that fatigue. For many, learning to practice energy conservation techniques is helpful. Keeping cool and well-hydrated on hot days can minimize the effect of fatigue. Being aware of stressors and managing them also helps. Substance use, such as alcohol or cannabis, can worsen MS fatigue. Unfortunately, there are no magic treatments or cures, and we must find what works best for us.