Fatigue is the bane of my existence. Clutter qualifies as my lifestyle. If I can’t see something it may as well be lost. I spend about 50% of my day trying to find things I have put “someplace safe.” The other half I spend looking for something I just had in my hand, became distracted and placed it in an unusual place.
MAKE A MOLEHILL FROM A MOUNTAIN: I devised a method of addressing this energy and life-sapping daily experience. I try to do 10 things a day before I allow myself to, say, play Words With Friends. Mind you, the bar of what qualifies as one thing is very low.
Putting dishes away can be counted as one task on a good day. On a more challenging day, the 10-task minimum can be hit by counting each dish that I put away. Often I find that once I start with the 1o, it is easy to add on a few more. Again, very low threshold to count: Open one piece of mail that has been sitting on the table for two days. (Obviously not recommended for anything urgent; those I do open right away.)
WORSENING FATIGUE: Lately, I have found it increasingly difficult to do almost anything. As I told one of my girlfriends one night, “I am too tired to open the refrigerator door.” That is serious fatigue. She suggested tuna fish. Great idea! My brain just didn’t think of a cold food option.
In addition to MS, I was diagnosed through a specialized sleep study with excessive daytime sleepiness (idiopathic hypersomnia) more than 10 years ago. The doctor doing the sleep test said I was one of the worst he had ever seen. There is a pharmaceutical for this: Provigil (modafinil)
OFF-LABEL USE: It can be difficult for people with MS fatigue to be prescribed this medication. Insurance may not cover medications for “off-label” use even when there is anecdotal evidence of benefit. Provigil was approved for use in narcolepsy and excessive daytime sleepiness (sleep disorders) and shift-work sleep disorders.
The drug is not cheap. It is unfortunate when something that works is unaffordable because of regulations that require expensive testing to validate the use for alternative circumstances. There is research ongoing to approve its use for MS fatigue.
The National Multiple Sclerosis Society article linked above and again here states:
Medications — amantadine hydrochloride (Symmetrel®) and modafinil (Provigil®) — are the most commonly prescribed. While neither is approved specifically by the U.S Food and Drug Administration (FDA) for the treatment of MS-related fatigue, each has demonstrated some benefit in clinical trials. The most recent trial of modafinil, however, reported no difference between modafinil and placebo in relieving fatigue.
My response to the last sentence is this: Then there must be something wrong with the study design because I know for a fact that Provigil works to relieve my fatigue. Not well enough to eliminate fatigue, but enough so that I do not have to sleep 18 of 24 hours.
UPPING MY DOSE: Unfortunately, my fatigue has worsened. After checking with my neurologist, we are bumping the Provigil dose up to twice a day. Provigil has a half-life of 15 hours, though, so I need to be careful to take a second dose no later than noon for this change, lest I throw off my sleep schedule completely.
MORE INFORMATION SOURCES: I did a brief Google search to see what other external information beyond my personal experience with Provigil was available on the web. There was an interesting blog that gathered quite a bit of material together on MS research. This blog cites and posts legitimate medical research journals papers, among other things, and is worth doing some searches (box on left of page) for topics of particular concern to you.
For example, I am having difficulty breathing, so I typed in “breathing” and found an article that I had read in another source, PubMed. Here is a link to an article about MS fatigue in PubMed (National Library of Medicine service.) These articles are written for other doctors and researchers, not for patients, so it can be hard to understand the language. I use Google to look up words I don’t know.
The Cleveland Clinic has a notable multiple sclerosis treatment and research center. Here is a link to one of their articles on fatigue. Another good article on a research project from University of California, Davis, connects MS fatigue with undiagnosed sleep disorders.
FATIGUE IS REAL AND DISABLING: Fortunately, we live in a time when fatigue is not dismissed as laziness. Fatigue is a significant problem for many MSers. It is not just “all in your head,” or resulting from “depression” (the go-to diagnosis that is NOT the same as MS fatigue).
MAKE CHANGE HAPPEN: Talk to your doctor, check about insurance coverage for a prescription, and modify your lifestyle to cut yourself some slack. If you are too tired to make a meal, keep some nuts (protein!) on hand, or simple microwave meals. If dishes pile up, just pick silverware to wash if you don’t have a dishwasher. Cut down the things that need doing into tiny manageable portions.
Pick a number you feel you can do, do it, and then call it a day. Treat yourself in some way to reward your accomplishment.
Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.
Just wondering, did you have fatigue before being diagnosed? Was it to the extreme that you describe today? Did your fatigue worsen after starting DMDs? Have you adjusted your diet/fitness?
I did not have fatigue before being diagnosed. My first symptom, optic neuritis, occurred in 1987. I was not told I might have MS but I looked that up in my encyclopedia and it made the correlation for me. I was not diagnosed until 1994. The sleepiness and extreme fatigue did not start until 2002. I was unable to be on DMD therapy until 2005 for the first time (as I recall), then I could not afford so stopped, then got on again about 2013. There was never any relationship between DMD injections and fatigue as far as I can tell.
I have had to adjust my fitness to my sorrow by eliminating most of it: yoga, special MS exercise program, swimming, and other activities because I simply cannot do much without having to take a nap and that makes it hard to travel to swim for example, or attend yoga classes.
My diet is pretty much the same as it has ever been. Nothing special. Spinach salads with pecans, canned chicken, and croutons. Soup. Simple to heat up in overn prepared foods because cooking takes too much time and effort.
That was very strange reading in that I too have the “safe place” issue- until I finally designated a certain drawer as the safe place. I also do the “must do 10 things” strategy for getting stuff done and yes, I too manipulate what counts as 10. Putting pandora peppy music channels on helps with motivation. I tried adderall but did not like the side effects and like duck imprinting, got sucked into whatever I happened to be doing when the drug kicked in. So, you are not alone and perhaps that offers a bit of solace.
Thank you, the idea of a single “safe place” is brilliant in the simplicity and sensibleness. I will do that from now on. I think I will also start listening to Pandora while I do my 10 things. Sometimes I listen to books on CD.