Are You Ready for Bed at Noon? It May Be More Than Fatigue

Ed Tobias avatar

by Ed Tobias |

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I thought I’d finish writing this last night, but I was too tired.

Same thing the night before, and I’m sure this sounds familiar to a lot of you. The National Multiple Sclerosis Society estimates about 80% of the people who have MS have fatigue as one of their symptoms. (Only 80 percent? The other 20% must be faking alertness.)

I use the drug Provigil (Modafinil) to improve my alertness. I like to swim in the summer and do some strength exercises in the winter. All that helps. But is there something we can do that many of us may be overlooking? Something like checking for another illness on top of our MS?

Is it a sleep disorder?

A 2014 study in the Journal of Clinical Sleep Medicine indicates we may be closing our eyes (sorry, I couldn’t resist that pun) to the fact that sleep disorders, such as narcolepsy or sleep apnea, are disrupting our sleep and causing some, or most, of the fatigue that we attribute to MS.

Researchers at the University of California, Davis, and Boston University studied a group of MS patients who said they had excessive daytime sleepiness (based on the Epworth Sleepiness Scale), or an abnormal level of fatigue (based on the Fatigue Severity Scale).  Of that group, 38% screened positive for obstructive sleep apnea, 32% for moderate to severe insomnia and 37% for restless legs syndrome. Yet, only between 4% and 12% of that group reported they had been diagnosed for one of those illnesses.

This seems to be more evidence that something known as “diagnostic neglect,” which I wrote about several weeks ago, is going on. Many of our doctors seem to have tunnel-vision when it comes to the possibility that a problem other than MS may be causing one of our MS symptoms. Even my neurologist, who I love, has never suggested that I be tested for an illness such as sleep apnea. I’m up twice, sometimes three times, a night and we’ve always attributed that to bladder problems. Maybe it’s something else. I plan on asking her about this on my next visit. If you’re tired much of the time, maybe you should have the same conversation with your doc.

Before you see the doc …

Before you have that chat, there’s a good overview about MS and sleep problems on the website of the National Multiple Sclerosis Society that may be useful to you. Taking the time to give it a read will give you a good foundation for that talk.

How about you?

Have you been diagnosed with an illness that may explain, or exacerbate, one of your MS symptoms?  Please let us know.


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Catherine avatar


Hi Ed,
I have RRMS and have also been diagnosed with Rheumatoid Arthritis. Apparently these two go hand-in-hand. Now I don't know if the stiffness I feel is the MS or the arthritis. As an aside, I think it's a bit much to have two autoimmune disorders :-(

Ed Tobias avatar

Ed Tobias

Thanks for your comment, Catherine. If you're seeing both a rheumatologist and a neurologist do you know if they're talking to each other? It seems to me that they would need to compare notes in order to answer your question about the stiffness.

And, yes, two lousy disorders is a bit much. But, you're not alone. I've found that a lot of people are carrying two, or even three, serious illnesses. It just means you need to be two or three times stronger. I know, it's easier to say than to do. But, as baseball relief pitcher Tug McGraw is famous for saying "Ya gotta believe."


Catherine avatar


Thanks Ed. My consultants are based at two different hospitals but fortunately they do communicate with each other. However the Neuro thinks the arthritis is to blame and the Rheumatologist thinks it is MS! Of course, it could just be old-age!


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