(This post first appeared as my column on http://www.multiplesclerosisnewstoday.com)
I thought that 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 that about 80 percent of the people who have MS have fatigue as one of their symptoms. (Only 80 percent? The other 20 percent 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. And that helps. But is there something we’re overlooking? Something like 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) to the fact that actual sleep disorders, such as narcolepsy or sleep apnia, 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 percent screened positive for obstructive sleep apnea, 32 percent for moderate to severe insomnia and 37 for restless legs syndrome. Yet, only between 4 and 12 percent of that group reported that they had been diagnosed for 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 web site of the National Multiple Sclerosis Society. Taking the time to give it a read will give you a good foundation for that talk.