Living Well with MS: Battling Fatigue
Somebody zapped my energy and I just can’t seem to get going. Does that happen to you? There’s no good reason for it like having little kids to keep up with or being sick. I’m just tired, so very tired lately.
One of my most disabling symptoms in the first years after the MS diagnosis was fatigue. I could get up in the morning, feel normal, and crash shortly after noon. That presented a challenge as my workday, teaching music lessons, would begin close to 3:00 pm.
My husband (my boyfriend at the time) was sweet enough to give me an alarm clock to keep specifically near the couch as that was where I would crash. I used that alarm clock regularly for months upon months every day. When I talked to my neurologist and MS nurse about the fatigue, I was prescribed a medication and was told that coffee helped a number of people with MS fatigue. I gave both a try with some success, but not always total success.
After I switched disease-modifying treatments in 2009, I realized that I hadn’t been fatigued. I was no longer feeling the powerful urge to be a lump and do absolutely nothing. As the drug I switched to was prescribed for my RA, I wondered if the fatigue was really RA-related rather MS-related. Either way, fatigue is fatigue and it’s no fun.
The treatment I use for RA, Rituxan, has been studied for use in MS. The trials in relapsing-remitting MS had positive results but the drug company chose to proceed in ongoing trials with a very closely related medication instead. Since starting Rituxan, my RA has improved to the point that now I know what remission is and my MS has become quite stable.
Rituxan is a monoclonal antibody therapy which targets CD20+ B-cells and basically causes them to self-destruct. It is given by intravenous (IV) infusion with treatment rounds separated by several months. For me, as the effects of the therapy begin to wear off, I notice subtle symptoms returning.
The last couple of weeks, my toe joints have been a bit stiff. During the past few days, the smaller joints in my fingers have complained with a whimper but not a full out cry. Perhaps that’s why I’m so tired...the fatigue is returning because it’s getting closer to time for another round of treatment.
Yesterday, I slept several hours during the middle of the day, not all at once as I kept trying to wake up fully and do something productive. It just didn’t work. Today has been much the same.
Fatigue makes me feel like a heavy lump which can’t think straight and doesn’t want to do much of anything. Do you know what I mean?
Perhaps I should rally myself to GET UP and go take a shower. That might help; as I skipped it yesterday, I’ll certainly smell better. It should also make me feel better. Then I’ll go have some coffee. It’s a little too late in the day to take Nuvigil as that would keep me up tonight when I want to go to sleep and insomnia is definitely not something I want to trigger. Been there, done that before.
So, that’s it. Decision made. I will get cleaned up, drink some coffee, and find something to eat for lunch. Sounds like a plan.
What do you do when you get fatigued? Do you ever talk to yourself to get motivated to do something, or is that just me? Please share your story.
Does listening to music help lower the severity of your stress or MS symptoms?