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.

What NOT To Say To Someone With ME/CFS and/or Fibromyalgia

photo by  http://www.flickr.com/photos/allesok/

Recently, I was helping a friend explain the debilitating nature of Clinical Depression to her family.  She's been suffering severely for over a year and none of the medications or other therapies have helped her.  Since her family members had never experienced the profound effects of depression, they were unable or unwilling to put themselves in her shoes. It reminded me of how similar Depression, ME/CFS and Fibromyalgia are, in that, all three are virtually invisible both physically and physiologically.  Since there are no medical tests that can really validate their presence, or visible rashes, skin discoloration, etc, the existence of these illnesses are experienced only through the perspective of the sufferer.  If the individual doesn't have a compassionate, well-educated family, their experience can be ever so much worse.  A strong support system is vital to anyone with Depression, ME/CFS (Chronic Fatigue Syndrome), Fibromyalgia and many other maladies.

Following is a a short list (to be amended in the future) of seemingly harmless comments that should never be made to someone who is suffering from Depression, ME/CFS (Chronic Fatigue Syndrome) or Fibromyalgia (and probably many other diseases as well).

1) "Well, you look great" 

These can seem as though they would be words of encouragement to someone who is ill.  After all, who doesn't like being told they look good?  In this case, though, it's one of the most hurtful things that can be said as it seems to reinforce the feelings of loneliness and lack of empathy.  Looking great does NOT mean feeling great.  Saying that someone looks great is often interpreted as a brush-off and a conversation stopper.  I can't count the number of times I've heard this.

2) "It's probably just the change of seasons.  You'll feel better when Winter is over." 

Minimizing a person's pain implies that you are not taking their suffering seriously.  This comment is also a conversation stopper.  At this point, the sufferer, after attempting to reach out for help, feels frustrated and hurt.  They being wondering, "Did she even hear what I just said?".

3)  "You'll feel better once those baby hormones are out of your body." 

Of course, this is a comment only a specific subset of sufferers will hear.  In my case I heard it many times since I first became ill while I was pregnant.  Again, it implies that the sufferer is over-reacting to common ailments everyone experiences.

4)  "I know someone who had Fibromyalgia and they got better by pushing themselves to exercise". 

I heard this several times and it was among the most painful comments.  Since there is a very wide range of symptoms and severity of symptoms, one case of Fibromyalgia (or Depression, ME/CFS, etc) simply cannot be compared to another.  In my case, exercise would only hinder my recovery.  I tried to exercise on those rare "good days" and it always backfired on me in a BIG way.  See my post "Graded Exercise:  How NOT To Do It".  Saying something like this to someone implies that they are lazy or just not trying hard enough.  For a very self-motivated person like myself, this really hurts.

With all this being said, I realize that these comments are usually uttered with the best of intentions.  In fact, I may have been guilty in the past of making some of them myself.  However, after experiencing the full wrath of ME/CFS, Fibromyalgia and Depression, I will certainly never make that mistake again.

What comments have you heard that really hurt or upset you?  I know I've missed many.  Please comment below, I'd love to hear your opinions.  I'll certainly be amending my list.

Wishing health and peace to all, especially those who were effected by Hurricane Sandy.  New Jersey is where I was born and was my home state for many years.  My heart is right there with you all.