Are you sleeping at night?? PART TWO

In response to my last post of "Are you sleeping at night??" I received an anonymous response, "The answer is no."  That answer is no surprise because people with fibromyalgia are exhausted from unrefreshing sleep.  This is one of the hallmarks of this illness and I believe that lack of sleep is worse than the severe pain that people with fibromyalgia suffer.  If people can get refreshing sleep, other symptoms will improve, but without adequate deep sleep we are like dogs chasing our tails.  I certainly feel your exasperation with trying to function with months and years of inadequate sleep.  In fact, people with fibromyalgia have sleep that is so inadequate that we might as well have not gotten any sleep at all.  I can tell you that is a difficult concept for others to comprehend.

I had a sleep study last night and it was a very tough night.  For those of you who have never had a sleep study, let me describe more about my experience.  After my arrival at 8:00 pm the tech began to hook me up to the equipment that would be my bedfellow for the night.  Electrodes were attached with goo or tape to my lower legs, behind my ears, on my forehead and in strategic places on my head . . . my hair was a gooey mess!  I also had two EKG stickies on my chest, a mic taped to my neck, several devices that would measure airflow were hooked around my ears and placed beneath my nose.  I also had a pulse oximeter attached to my finger and two straps were fastened around my torso snugly.  There was a 360 camera in my room and a overhead microphone so staff could hear whatever I was saying.  I'm wondering if anyone got a free show when I changed into my jammies!  Several photos were taken of me in this condition and I was reassured that these would not be posted on the Internet.  I secretly thought "What difference would that make?  No one would ever recognize me anyway."  I was told the photos were for quality contol and so the doctor could recognize me.  I'm hoping he won't!  The tech was focused on Cpap and wanted to know if I wanted to try it out.  Hmmmmm.   I said "no thank you".  I sure don't want to encourage that when my sleep issues are much more complex than using a Cpap mask as the "cure".  So then I was told I could go to bed and go to sleep.  Hmmmmmm.  I tried a number of positions in an attempt to get comfortable, but it was a "no go".  Those electrode on my head were so lumpy and painful and my arms laying on the wires hurt and I couldn't escape either.  The room was pitch black with no windows and I didn't have a clock available so I had no idea if it was day or night.  I woke up frequently in pain and just trying to get comfortable.  I was told I needed to sleep part of the time on my back, but when I attempted that I couldn't sleep and my feet were both on fire.  My throat was so parched from some of the medications I'm on, but I had a heck of a time getting the water to my mouth because I had so many wires and so much tape on my face.  Every time I would wake up I wondered what time of day it was and how many days I had been there.  I estimated it was probably at least 4 days.  At 7:30 am the tech appeared and flipped the overhead lights on and said good morning.  I'm thinking, "Oh yeah?"  I asked her how her night was and she said she has a headache.  I'm thinking again, "Oh yeah?"  She began to remove the wires and began ripping tape off my cheeks, my upper lip, my temples, forehead, and my neck taking some skin with it.  She told me it was a free wax job . . . no thanks.  Then she used an adhesive remover that stung on my raw skin.  As she removed the electrodes from my hair, I remarked that I wished I had come bald and then I was wondering if I might leave bald anyway.  Chunks of hair were attached to the electrodes.  The tech told me that it would grow back.   All of this before going to the bathroom in the morning!  Yikes!  So I threw on my sweats and jumped in the car to head home.  I was so fatigued and short tempered, all the drivers out there were getting on my nerves.  It was a 45 mile trip home so by the time I arrived I was quite irritable and a woman truly on the edge.  So that's how I started my day.

Sleep loss is so debilitating for people and has such a profound impact on quality of life.  I see this as a critical piece of the fibromyalgia puzzle.  I'm sure you have had the experience of someone telling you how tired they are and you were most likely thinking "You have no idea what tired is".  The other scenario is that I will remark I'm feeling tired and then other people around me start complaining.  That's when I feel as though I'm not connecting with these people at all.  So here we are in the trenches together and I am grateful for the good company I'm in.  I feel and understand your pain and your exhaustion.  I want you to know that, because I don't want you to feel as though you are carrying this burden alone.  We are all in this boat together.  I have the follow up with the sleep specialist on August 22nd and will get the results at that time.  So stay tuned and I will let you know what I learn and hopefully it will be beneficial for many of us.  Take care and sleep well tonight . . . and sweet dreams too!