Health-related quality of life regarding sleep and fibromyalgia "The study concluded that among the FM population as a whole sleep difficulties were associated with decrements in mental and physical health-related quality of life. Therefore these results suggested there should be greater emphasis on the treatment of these issues."
Sleep and Fibromyalgia don't really seem to get along but it is true it can be ignored by doctors. When I was younger I was often told chronic insomnia cannot be treated. It reminds me a lot of what they think about chronic pain in fact... that seems to be unable to be handled either. It seems they are only willing to deal with temporary insomnia and pain. Unfortunately there have been a few studies to show with FM even those with no other sleeping disorders... they are not getting quality sleep, whether they get 8 hours or 10 hours. Waking up feeling tired even though you have technically gotten your 8 hours is not exactly functional sleep. However, when you begin to add in delayed onset insomnia, frequently waking at night... then you have decreased that 8 hours substantially into say 4 hours of poor quality sleep. Some people with FM may also have sleep apnea or restless leg syndrome. So sleep issues have to be addressed in some way so that sleep quality and quantity can be improved as much as possible... which then does improve other symptoms.
In my specific case I have delayed onset insomnia and frequent wakings. This would be one of my earliest symptoms to FM and so that has been since I was a kid. In other words I do not remember a time when I had solid sleep, if I even got it. I tried supplements and sleep hygiene. My room is dark and cool with no distracts. I do all the things you should to get a good sleep. The fact I just never really do was just a fact of life and since doctors never did anything about it I just dealt with it. However I did start getting hypnotic jerks and sleep paralysis in my twenties. And these became more frequent once the migraines did... because you see chronic migraines made it even more impossible to fall asleep at night. Or stay asleep. So I would get this bouts of sleep paralysis over and over in a night, through a week when the migraines were bad if my sleep was even worse. And lots of hypnotic jerks that would jerk me awake just as I began to fall asleep, in almost any damn muscle group. And then violent migraines in the morning or the middle of the night from lack of sleep. Lack of sleep is a migraine trigger. Migraines cause more problems sleeping... vicious cycle.
My doctor at the time said I was sleep deprived. Literally always sleep deprived. And some indications of that was the repeated sleep paralysis and hypnotic jerks. Another indication the violent morning and midnight migraines I was getting. I agreed. Not like I had been getting Good sleep before and the migraines made that worse. I was quite aware I got very little sleep a night and of that it was very poor quality sleep. She put me on a sleeping pill called zopiclone. Which in fact does not knock me out at night or through the night, but it does get me to sleep faster and I wake up less and get back to sleep faster. And after a few months on a double dose of that, which does work very well, I stopped getting regular morning migraines triggered... instead I get sort of a gap before the migraine is triggered. I stopped getting such frequent sleep paralysis episodes, just happen when I get really acute long lasting migraines that cause serious sleep disruptions and I still have to get up early. And the hypnotic jerks are also quite rare now. So on one sleeping pill a night I get about 5 hours of decent sleep a night... but if I have an acute migraine of a pain level that is on the upper ends of the pain scale the sleeping pill is not effective, but then I don't think sleeping pills really are effective for such levels of pain. So on such nights I have a great deal of trouble sleeping, if I do, and this can screw up my sleep cycle.
There was a site that had this and I had linked to it on Tumblr but it is gone. So I had to hunt down someone who found my post and posted the whole thing in a forum. Anyway it is around but I'm posting it here so I will not have to hunt it down to reference it. Now we all know the major symptoms are the wide-spread pain, but our pain isn't just muscle pain... it can be nerve types of pain as well, and the fatigue and the insomnia. And even among symptoms there are some far more frequent than others, but it should be said we have categories... like the cognitive dysfunction, which is a broad one that has more than one symptom and we often just say fibrofog. The insomnia... more than one sleeping disorder. So the list is interesting.
__ Fatigue, made worse by physical exertion or stress
__ Activity level decreased to less than 50% of pre-illness activity level
__ Recurrent flu-like illness
__ Sore throat
__ Tender or swollen lymph nodes (glands), especiall…
When people ask me how I am feeling 99% of the time I am lying. I often say 'not bad', because I feel it is slightly more honest than 'good' or 'fine'. Got sick of fine. Anyway, I lie for many reasons.
I'm having a good pain day: They happen and I'll say that I'm good, fine, not bad. I even feel like I can accomplish great things... in moderation. In which case, relatively speaking, for Me I am not actually lying. This is a Good pain day, it is Not Bad for me and I am Fine with it. I just don't want to explain: I just don't want to explain how crappy I feel and in which way I mean. Because I am tired of it. I just want to deal with it, without having to discuss it, mention it or have any sympathy expressed about it. Because it can be complicated. It may be a migraine with specific symptoms. Maybe it is a FM flare though. Or both. And then I have to explain what it is because most people think my migraines are the main issue but I could be FM…