About Me

My photo
I'm a mom, a wife, a best friend. Sick with CFIDS/ME/CFS and Fibromyalgia since 1975 as a result of a nasty flu while still in grad school, it wasn't until the late '80's that I received a diagnosis. Until that flu I'd never really been ill before. With each year I get progressively worse and add to the bucket load of symptoms I'm living with. I've been blessed with an incredible family and best friend who've stayed with me through my struggles as we continue to find a way out of this monstrous illness and its complications. We've tried seemingly every approach to find my way back to health. Often I think our best weapon in this undesirable and unasked-for adventure has been laughter.

Friday, November 30, 2012

Friday Tidbits: Severe Insomnia

I've stayed away from writing much about my severe insomnia, which one neurologist labeled "malignant insomnia" - a mistake, I know.  It's not quite malignant in the sense that it's not been fatal yet.  However, it's such a huge topic to cover and when it comes to my case, it's absolutely the bane of my existence.  I've long lost count of the doctors I've seen and the treatments I've undergone: the neurologists, rheumatologists, sleep specialists, fibromyalgia specialists, CFIDS/ME/CFS specialists, not to mention going the alternative medicine route with applied kinesiology, rolfing, acupuncture, acupressure, nutritional IV's, chelation and so forth.  The chelation part: I was found to have heavy metal toxicity off the chart and hubs in his cute (!) way exclaimed, "you're a walking toxic waste dump!"  Cute, hubby, cute!  (Not!)

I relatively recently went to a sleep study where I did not fall asleep at all.  Consequently, the studies told us absolutely zilch because one needs to fall asleep for at least 10 minutes in order to get any sort of reading. 

Normally, I can get a few hours sleep a few times a week but I can and often do go 42-76 hours with no sleep whatsoever: perhaps once or twice a week. Then, a curious thing happens: I crash and have what we in the family call a "marathon sleep."  It'll last about 12-24 hours but doesn't come even close to the sleep I've missed and worse yet, no one knows when it will happen.  Exclamations of "she's due for a 'marathon sleep'" rings throughout the house after too long a period has gone by without a long sleep.  I simply want for someone to hit me over the head with a mallet and let me be out for a few days.  

And to make everything truly exciting, really bizarre things occur: one Christmas I had overdone it so much that I fell asleep, finally, after presents were opened in the morning, and stayed asleep until New Year's Eve. Hubs and the kids would take turns checking to see if I was alright, but I would yell out "would y'all cut it out, for heaven's sake?"  You see, there's a squeaky board right outside my bedroom and it gets a rhythm going as each person shifts from one foot to the other in order to get a good look at me.  Now mind you, I remember none of this....  These are the facts presented to me to prove how impossible I am when anyone dares to interrupt my sleep. (Gee, really?)

There are so many aspects which I hate about my incredible insomnia.  Here's a good start:

  • No one understands how really bad it is, an understatement.  My last neuro has finally thrown in the towel and recommended that I go to one of the five top sleep centers in the world, my choices as to which.  He's seen me for decades, off and on, and has finally admitted that he's never seen anything like it.  I, in turn, refuse to go back to see him again because he seems to think rohypnol, the "date rape" drug, would help.  Is he nuts?
  • How can one make doctor's appointments, indeed, any sort of plans, when one never knows if and when one will fall asleep?  I try my hardest to get some sort of schedule going, but nothing helps.
  • The longer I go without sleep, the harder it gets to fall asleep.  Furthermore, the more tired I am, the harder it is to fall sleep.  (Talk about double curses!)
  • My insomnia is not caused by obsessive thoughts when I need to sleep.   For some odd reason, I can turn off the day gone by or the day to come.  Instead it is the limbic system being screwed up.  I liken it to a defective light switch.  Sometimes it can be turned on with a bit of a jiggle, but for the most part it just doesn't respond to any cues.
  • By taking so many meds, I know I have a great possibility of shortening my life span.I never have my days right any longer because I don't have a division of night and day. It started with Christmas years ago - misjudging when Christmas is.  (Me to hubs and daughter: "You're just messing with my head. What do you mean it's tomorrow?  I thought it was in four more days!")
  • Each and every moment and movement that I'm awake is geared towards how it will affect my sleep, whenever it chooses to happen, that is.  I digest nothing that may hinder my sleep - in fact I'm afraid to be found in the same room as any food that may keep me from sleeping.  You never know what may be contagious! (Joke!!)
  • My bedroom is and has always been the perfect room for sleeping.  Light bulbs are chosen with care, as are lamps, bed linens and so forth.  A word should be added here regards to hygiene. You're told to use use your bed only for sleeping.  But what is one to do if one is afflicted with CFIDS/ME/CFS and fibro and needs to be in bed a large part of the day due to the extreme fatigue characteristic of those illnesses?  The medical profession needs to come up with better advice for such patients.
  • Until recently I read every book on sleep that I thought would not be a total rehash of what's been written about it a million times already.
  • I do think that having gone to uni as a literature major - thus great sleep deprivation - didn't help matters.  However, I remember sleeping a LOT in the early CFIDS/ME/CFS fibromyalgia years before I had my three little ones, all within three years.  This couldn't help but damage something within me as far as sleep is concerned.
  • And do not be fooled into thinking insomnia is just an inconvenience. For example, it's due to my severe insomnia that my pituitary gland pretty much stopped making any adult growth hormone.

Do you have trouble sleeping as well (understatement time once more!)?  Have you been able to work around it or deal with it successfully?  I loved the "holistic clinic" I drove to for a few days every week for an entire year, until the clinic pretty much imploded. Before going there, I was so sick that I could barely get myself into the car, much less endure a 2-3 hour ride - but eventually I was well enough that I was able to drive myself. If I could find those services, such as the applied kinesiology and gentle rolfing, I'd be back in a heart beat.

In the meanwhile, I hope everyone is doing their best, only better. Ciao and paka.


  1. Fab post Irene, I suffer from insomnia too! It's just so annoying when you are tired and can only manage a couple of hours sleep during the night! I agree with everything you said and I can't tell you how much I love your blog n admire you! Chloe xxxxx

    1. Thanks so very much, Chloe, for your kind words. So sorry to know that you suffer from insomnia as well. Yes, it's maddening when you're exhausted and can't sleep. I hope this gets better for you, and soon! xxx

  2. Thanks for this personal insight, Irene, into the really dire problem of insomnia that is sadly all too common with M.E/CFS conditions. I suffer too and feel so sorry that your symptoms are particularly severe and unusual. Let's hope medical science can find better treatment and help in the future. You have certainly explored all the options! Life very much has to be worked round one's individual pattern. Praying for you to have some relief. God bless you, my friend :)xxx

    1. Joy, as always, comforting and wise words. Thank you. I'm so sorry that you suffer from insomnia as well. It just complicates everything so much, especially our health. I appreciate the thoughts and prayers! I hope your insomnia gets better as well, my friend. xxx

  3. Found this post really interesting. I suffered with insomnia for years too (and horrific nightmares if I did sleep). I also struggle with chronic fatigue and pain, but I think for me the insomnia was completely unrelated and more a spiritual issue resulting from past experiences. Thankfully I was healed from the insomnia a few years ago, after 20 years of sleepless nights. This was following a great deal of prayer and big life changes. All the best with your journey, I hope you find relief from this soon.

    God bless,


    1. I'm so happy to read that you were able to overcome your insomnia, Ruth. Getting it under control must have helped your chronic fatigue and pain to some degree, I would imagine. Thank you for your kind words and thoughts. xxx

    2. Irene, that could have been me writing that. You're the only person I've come across that I can relate to as far as the severety of my insomnia goes. Regularly go 3 to 5 days and twice gone 7 days. By that point I was on the verge of being committed or arrested! Thank you so much for sharing xx

    3. And thank you, Lisa, for writing in. It really helps to know, when you'd do just about anything in the world to get some rest, that you're not alone and that there are others out there with severe insomnia. And it's the computer age that has helped me in this as well: get on your PC or iPad and you can see that others are up too. Relief! Thanks you SOOO much for writing in. I really appreciate it!

  4. When there's very little you can relate to sometimes, reading something that hits the 'omg that's me' button is like a great big hug when you need it! I dont care if nobody else gets it' anymore, I know you do and I know I'm not going round the bend imagining it all. In our house they call the marathon sleeps mams 18hr coma's although they're never just 18hrs lol. Hoping we get our next one soon :) xx

    1. Yes, Lisa! I hope we both get a coma/marathon sleep, and soon! Severe insomniacs unite! xx

  5. Irene, like Lisa said, that could have been me writing this post. I knew that many Fibro patients have severe sleep issues, but I hadn't come across anyone who spoke out about their insomnia like you have here. In fact, I found it kind of chilling to read about how you didn't think anyone really understood how bad your insomnia was. Oh, I do. I do!

    I have found that if I sleep whenever my body wants to, for as long as I can, it's a bit better for me. I still have inexplicable phases of insomnia followed by, like your family coined, "marathon sleep". The only difference is that my usual days of sleeping is now broken up with periods where I can't seem to stay awake OR asleep more than a few hours at a time. Sometimes I think that is far worse than days of insomnia.

    Like you, I know my Circadian sleep rhythm is permanently screwed up. I find that I cannot sleep at night anymore unless it's been days of insomnia and my body finally decides that that is the time I'm going to be able to pass out for more than a few hours at a time. I simply seem to sleep better during the day. It's been like this for decades. I also find it incredibly difficult to plan for anything, even a simple doctor's appointment, because of my sleep issues.

    I have had a CPAP machine (100% compliant) for roughly 6 years now. It seemed to help at first, with my ability to get more refreshed sleep. Now it's just a quirky thing that I have to do because I just can't sleep without my mask and that wonderfully humidified air pressure.

    It's an amazing thing when you come across someone else who truly understands what you are going through. To know you simply aren't alone. I often am so very grateful for the internet and the ability to meet people like you. If not for the ability to talk to others who truly understand what this is like, I'd have been in such a worse place in my head than I already am. lol

    Wishing you all some fantastic #Napture time! There's nothing better (for me) than actually having a really good nap! Coz let's face it, getting 3-5 hours a sleep at a time just doesn't rate being called "sleep" when it's not even remotely refreshing.

    I've coined a few words since I started using Twitter to talk to other spoonies. #Napture is kind of self explanatory. Another fave of mine is #Confuseless. It explains how I feel with the Fibro Fog is having it's way with me. Or when the meds have made me feel like a zombie for a few hours - and I find myself staring at walls lol

    So glad you stopped by my blog and left a comment. Of course I've come to visit your blog too. I'm sure to be a frequent repeat visitor :)

    1. Thanks, Shannon, for putting down so many thoughts. It really makes ME happy to see i'm not alone, though I wouldn't wish this on anyone, ever. I have a second post on the sleep issue brewing and I hope to get to it after the holidays are over. I think those with sleep problems may find it interesting..
      So glad you're here...thanks! xx