The Terrifying Nightmares of ME/CFS & Fibromyalgia

photo by Kristy Throndson, Nightmares of Fibromyalgia and ME/CFS

Last night, as I was getting ready for bed, I took out my pills as I do every night.  After cutting them into their correct doses, I put them down on the counter and went to fetch some water.  I thought I'd swallowed them, but apparently, I never did.  I found them still sitting on the counter at 2:30 am after what seemed like hours of tortured sleep.  I was so frozen with fear that it took a couple of minutes before I could convince myself that it was safe to put my feet on the floor and walk to the kitchen for a glass of water.  I was very confused as to why this was happening when I discovered my pills sitting on the counter.  The 1.5 mg of lorazepam I take daily before bed seems to push me through the perpetual disturbed REM or dream, sleep and into deep, restful sleep.  I've been taking it for about two years so, thankfully, I haven't experienced these nightmares on a regular basis for some time. 

I call these episodes nightmares because I don't really know another way to describe them.  However, they're nothing like anything I experienced before I became ill.  Maybe the term "night terrors" would be more accurate but I don't really understand the difference between the two.  I may need to do more research on this subject. 

My night starts with about thirty minutes of tossing and turning before I finally nod off, then, it gets scary.  I fall into a disturbing world that seems so frighteningly real.  The twisted nature of these dreams is a topic for another day, that is, if I ever feel comfortable writing about it. I won't go into too many details but in one example I can remember running, in darkness, across an endless field covered with the sculls and bones of babies that crunched under my feet as I desperately searched for solid ground.  I awake for a moment or two sweating and scared.  I fall back to sleep and into the same frightening scenario. The cycle of restless "sleep" and awaking repeats itself for what seems like hours but may only be an hour or so.  I have no idea how much time elapses while I'm asleep and a specialist I saw last year wanted me to have a sleep study done.  I would have liked nothing more but the two to three thousand dollar cost and my lack of health insurance made it impossible.  This specialist told me that sleep disturbances and nightmares were often a symptom of Fibromyalgia, ME/CFS and I have read this from other sources as well.

I've tried to describe these experiences to doctors but the true nature of these nightmares cannot be communicated somehow.  The sick feeling I get in the pit of my stomach is truly nothing I ever experienced in the past.  The closest thing I can compare them to are the nightmares I, and so many others I'm sure, had as children.  I remember being terrified to go to bed. 

It was very disturbing for me to realize how close I still am to that world of Fibromyalgia and ME/CFS.  Although I consider myself in remission, it is obviously a very thin layer of ice I'm existing on.  If I were ever unable to get my medication, I'd fall right through to where I was six months ago.  This thought is almost more terrifying than the nightmares themselves.