MS Fatigue - When My Tank is on Empty
A newly diagnosed person was asking about fatigue and I went looking for information to share. In the process, I learned a few new things about MS fatigue, but first I need to back up and explain MS fatigue, because it is different than normal fatigue.
Starting with a full tank
I like the analogy that I have heard before that we start our day with a full tank if we are lucky, but some of us may only be partially fueled to start out. The faster we go, the harder we push and the more we do, the more of our tank is used. If we pace ourselves correctly we can skid into the end of the day, often running on just fumes, and spend the night refueling to do it all over again the next day. If we miscalculate and use more of our energy than planned and try to exceed what is available, we can be brought to a screeching halt and left sputtering. You know that feeling, right? You’re cruising along and feeling ok and suddenly your body tells you it is time to stop.
Now what is it that drains all that fuel beside the normal day to day activities that everyone experiences? For me the major difference is it takes my central nervous system and body a lot more effort to move and maintain balance to keep me upright. Rarely do I walk without being conscious of how I am walking and making sure I am firmly planted with every step. People without MS just walk – and don’t use any extra energy doing so. I don’t know the scientific answer as to how much more it takes me, but it feels like it is at least 5x’s harder than my healthy peers.
Fatigue is one of the most common symptoms of MS
While reading a refresher Multiple Sclerosis: Clinical Manifestations,1 the numbers again jump out at me – two-thirds of people living with MS list physical and mental fatigue as their primary symptom. They clearly explain the differences and how MS fatigue is different from the tiredness that comes from a hard day or simple overexertion. MS fatigue is so prevalent, and about 1 in 3 people report this fatigue BEFORE they are diagnosed – such as ‘doctor, I get plenty of sleep but I still am exhausted –what could be wrong?'.
I was surprised to learn –yes, if you remember at the beginning I said I learned some new things – that fatigue does not correlate with our other symptoms. It doesn’t match up with our lesions, inflammation or depression. We may be fatigued, but it doesn’t necessarily mean our muscle strength is weaker.
We all know about fatigue from doing too much, getting overheated or battling infections - those causes of fatigue are usually obvious and come from an increase in our body temperature. What’s less obvious might be the things that bring our temps up just a small amount but still affect our energy. These are the types of things that can cause us fatigue without our having done any physical activity.
Our body temperature rises later in the day
The author mentions that there is a slight increase in our body temperature in the afternoon – I had not heard this before, but it sure would explain why I have a bout of fatigue almost every afternoon in the 3-5:00 range. They also mention an increase in temperature by a half-degree in women post-ovulation in the final days of their cycle (luteal phase, days 15-28). The question about menstrual cycles and MS come up every once in a while and now I have a solid answer to share about the associated fatigue. A body temperature change of as little as one-half of a degree can create problems in the MS riddled body and there are many scenarios as to how that might happen.
Daytime fatigue can also come from sleep disruptions we might not even be aware of, such as restless leg syndrome. But for me, the worst fatigue comes from any physical activity that lasts longer than a few minutes. I can work all day long at my desk or computer, but the act of getting up and moving quickly drains my tank.
Besides taking pharmaceutical agents for energy and learning to pace myself, I am still looking for ways to combat the fatigue. Any suggestions? I would love to know if others have unlocked the secret to keeping their tank at least half-full.
Wishing you well,
Do you celebrate your MS Anniversary?