Fatigue

In an earlier post, I wrote about being tased and how it’s a near perfect way to describe my worst moments with MS. I also noted that the description only makes sense to a person who has been tased before, so it’s of limited value. At the end,I mentioned that I’d talk about fatigue later, but after thinking about it some more, I guess what I was trying to describe with the taser example is, in fact, my MS fatigue. 

           We really should have another word for it because describing it to someone as “fatigue” really doesn’t do it justice and can be confusing for people.

“Oh you’re fatigued? I get tired too sometimes.” 

“No, it’s more than that.”

“Haha, don’t worry, I get it. Every once in a while I feel like taking an afternoon nap.

“No, you don’t ‘get it’, but I have a way to help you understand.”

“Is that a taser?”

I better make a quick disclaimer here. I am in no way, shape, or form suggesting that you use a taser on someone, no matter how much you want them to understand or how satisfying it would be for you. 

I know like all things multiple sclerosis, my MS is not your MS, so my fatigue may not be the same as your fatigue, but there are probably some similarities. Chime in, in the comments section  with your experiences and any suggestions for a better, more appropriate word for it.

With my progressive MS, there are no remissions, instead there are good days and bad days, good hours and bad hours. The bad times are when fatigue is in full swing. My fatigue is not the same as being sleepy although I suppose being sleepy could be a part of it sometimes. My fatigue is not the same as being tired, ie “worn out” either. When I’m fatigued, I’m tired…..so very tired, but I can be tired without being fatigued, if that makes any sense. What I mean is, I can come back from an intense session at physical therapy and feel tired from the effort and need to rest,  but that’s not the same to me as when I’m in the throes of fatigue which seems to blindside me at random times on random days. (there’s that consistently inconsistent thing that drives me crazy).  My fatigue comes on rapidly and just about makes me immobile. Did you know you can feel a loss of balance while sitting in a recliner? Apparently you can. It doesn’t increase spacticity but makes my limbs feel like they weigh 100 times more than usual. My extremities, especially my right hand (my right side is the more affected side), become cold and stiff. My eyes want to close, not in sleep, but because holding them open is an effort. When they are open, I have unfocused, sometimes double, vision. I have hearing loss and tinnitus, but when fatigued, I seem to be almost sensitive to and even annoyed by, noises. This is when my cognitive function is at its lowest. If thoughts had weight….(do they?) they’d feel 100 times heavier too and hard to move around and organize. Just getting a thought to go from brain to mouth, or fingers (typing) becomes extra difficult. I tend to talk slower than normal, my voice gets quiet and hoarse sounding and occasionally I even slur. Sometimes, it has an effect on my emotions too, mainly exaggerating them to levels outside my norm. Are you starting to see why I consider this to be beyond tired or sleepy, or how slightly irrational thoughts like using a taser to explain it to people who think it’s just being sleepy or tired suddenly seem rational?

 Like so many with MS, letting myself become overheated can also give me all of those fatigue symptoms (Uhthoff’s phenomenon) but it seems to fade as I cool down to a normal temperature and just leaves me feeling weak and tired. For me, getting hot can bring on a bout of (somewhat) reversible fatigue, while my nearly everyday, random fatigue seems to have no rhyme or reason and no means                  

If I were to describe it to people from a background similar to mine, I’d tell them to remember being in a high adrenaline situation, when the sympathetic nervous system (fight or flight) dominates and then when it’s over, feeling the effects of the parasympathetic backlash. The levels of parasympathetic hormones rise to balance the sympathetic ones and when the stimuli for the sympathetic response is past and those sympathetic levels drop, you are left with high levels of the parasympathetic hormones, etc and suddenly feel utterly exhausted and……well…..fatigued. 

I’m spitballing here, but I have lesions in and around my brainstem and sometimes wonder if any are having an effect on my hypothalamus and/or amygdala and are responsible for both my temperature regulation problems and random fatigue symptoms? If that’s the case, until there’s a remyelinating, or lesion repair therapy, there’s not much I can do about it. However, could counter therapy, i.e. something to balance the parasympathetic response reduce fatigue? I think I’ll bring it up with my neurologist next time I see him. I can tell by the way he sighs and how his eye twitches that he loves it when I ask things like that.*

*I’m joking. We only see each other every 6 months and he knows I have nothing better to do than sit around thinking up stuff like this, so he doesn’t expect me to ask yes or no questions.