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
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
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!