About Me

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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.

Sunday, March 17, 2013

Sleep: The First & Last Word in Fibro

Recently my rheumy and I had a discussion about how he likes to treat fibromyalgia.  Obviously, there is no one cookbook for this complicated disorder/illness but there is one very important principle he stresses.  First and foremost, fibro patients need to get better sleep.  That doesn't mean that you necessarily have to sleep long hours; it DOES mean, however, that you need to get the right kind of sleep.  In other words, the time that is spent asleep should be efficient in that enough "restful" sleep is obtained.

Rheumy reminded me that in the early 1970's, the link between a deficiency of restful sleep and the development of fibro was made by two Canadian researchers (Moldovsky, a psychiatrist - we'll give him a break that he went into THAT field! - and Smythe, a rheumatologist.)  Together they studied the sleep patterns of patients whom they diagnosed with fibro (or what would later be known as "fibromyalgia.")  Keep in mind that there were no accepted criteria for the diagnosis of fibro at the time.  The committee which set up the criteria didn't start their work until 1986/87 and the results were not published until 1990.  Moldovsky and Smythe observed that their fibro patients had a deficiency of Stage 4 non-REM delta wave sleep, the deepest, most restful sleep.

However, because they were good researchers, they realized that this deficiency might be the effect of fibro, but not one of the causes.  To try to figure this out, they attempted to experimentally induce fibro symptoms in healthy young adults.  Most of these subjects were college students (ah! that brings back memories of the days when I used to volunteer for silly psychology experiments!).  While observing how their victims subjects slept, the researchers interrupted the sleep of those hapless college students during different stages of sleep and monitored the effects.

For example, M and S (or would that be S&M?) would use a loud noise, an electric shock (had they never heard of the Geneva Convention?) or simply jostled the subject until the subject was out of whatever stage S&M the researchers were investigating.  When the subjects were deprived of Stage 2 sleep, for example, they did not get fibro pain.  Neither did they get fibro symptoms if any of the other stages, except for Stage 4, was interrupted.  When Stage 4 sleep was absent all of the healthy subjects developed fibro symptoms within a few weeks.  

Interestingly enough, some people developed symptoms later than others.  It turned out that these subjects (the ones who developed symptoms later, that is) were athletes, prompting the investigators to suspect that if you're in really good physical shape, it's harder to get fibro.  In other words, the usual sleep patterns of fibro patients looked exactly like the sleep patterns of the healthy young adults whose sleep was made abnormal, that is, when Stage 4 was interrupted by the researchers.  It's important to note that when the subjects were allowed to sleep without interference, all of the fibro symptoms went away.  This was not surprising since they were healthy otherwise, and were able to resume their normal sleep patterns quickly.

And so, in 1974 and 1975, Moldovsky and Smythe's findings were published in the Journal of Psychosomatic Medicine, which led to the whole decision to see if there was indeed a new "thing" in medicine, and if so, what was it and what to call it ... a story all its own, for another time.

Now, what can Moldovsky's and Smythe's finding teach us in 2013?  It appears that the development of fibro depends on a selective sleep disorder.  This may be very relevant for those suffering from CFIDS/ME/CFS as many of these patients also have fibro.  It may not be the only reason someone gets fibro but it is probably a necessary condition for actually developing fibro.

The research also tells us that if you resume a normal sleep pattern, you have a good chance of having your fibro symptoms improve or even go away for periods of time.  However, that is easier said than done.  How does one improve sleep and more specifically, how does one GET Stage 4 sleep?

One thing my rheumy told me is that he always asks his patients about things that might interfere with sleep and delves rather deeply into this aspect of a patient's life.  This is also why he likes to have a spouse or "significant other" there while talking to his patients: the "other" can often speak about what is going on with a person while he/she tries to sleep or thinks he/she is actually sleeping.  Some interference is, of course, easy to know and describe.  This can range from being interrupted by pets jumping on you while you're trying to sleep to a crying baby or not allowing yourself enough time to sleep because of work or other pressures on you. I abhor the term "sleep hygiene" but it does sort of have a place in that you should make sure your sleep is not interrupted by external factors.

However, there can be other issues not so easily registered by a patient.  I, for example, had a stage when I evidently had such fierce arguments with Stalin in my sleep that one night my weary hubs asked that if I were to argue with Stalin that night, could I at least argue in English so that he could be entertained?  (Cute, hubs, cute!)

Another thing that needs to be corrected is nocturnal myoclonus (link) which can literally jerk you out of Stage 4 sleep.  Of course, sleep medications can help, but that's a subject for another post.  

Obviously, sleep is a huge issue for fibro patients and if the sleep problems are not resolved there is little hope that the other symptoms such as pain, fatigue, decreased stamina and cognitive issues will improve.

As always, hoping everyone out there is doing their best, only better.  Ciao and paka!


  1. Irene - You are so smart, you amaze me. How do you know so much? I truly believe you know more than most doctors about what is happening to you. I wish doctors would have the humility to listen to their patients and try to figure out the best method of treatment to follow. As always, I wish you the best.

    1. Thanks, Martha. It's not so much smart as it is because I have been at this "game" for so long: much is because I've had to learn to think on my own and take what I've "discovered" either via my way of thinking or research or a combination of all to my doctors and insist on their listening to me. Yes, I DO wish more doctors had the humility to listen to their patients, as you wrote. Or even the "decency" would be nice, as I discovered at the "major medical center" my daughter was in so many times, and so often. Thanks for your support. It's always so appreciated, Martha! xx

  2. I really should start blogging again ,I have so much research that would help so many , Irene u make me feel guilty ,sleep is the big problem w fibro as we don't get into restorative sleep which is just 1 of the triggers .great job

    1. Hi Blair! It would be great to see you blogging, but don't beat yourself up either. You have been through a real h*ll and you have a challenging couple of years coming up. I'll be glad to see you blogging, but only if you don't put your health at risk, sweetie! xx

  3. So delighted to stumble on this! Please tell me: have you had an official sleep study done? (Please tell me that's a yes.) I have not had docs who listened and wound up being undone by sleep disorders, but am recovered/-ing with my best buddy, my PAP machine. And yes, I've seen stuff on fibromyalgia and sleep, etc. Are you familiar with Mack D. Jones, MD's book Deadly Sleep? I think he may have self-published, but he's a board-certified neurologist who got apnea,and I completely agree with his contention that, unless research unequivocally proves otherwise, untreated sleep disorders (apnea in particular) are at least one cause of dementia. You might enjoy the book. Good luck to you! (I'm on Twitter about sleep disorders just recently at @BrainsNeedSleep.)

    1. It was a pleasure to talk to you on twitter today! As I indicated, we were able to eliminate the apnea. More than that is complex. See Friday's entry for more info on that. Thank you for the book recommendation. And thanks so much for stopping by, reading and commenting. I hope you return! xx