To Sleep or Not to Sleep?…So Tired of That Question!…Fibromyalgia and Sleep

What do I say about fibromyalgia and sleep that everyone doesn’t already know?…Ha! Try to get some sleep?…Ha ha! It’s good for us?…Ha ha ha! And…EASIER SAID THAN DONE?…but everyone knows that too!

I’m not sure I have anything to say that we all don’t already know. But I have made a few observations over the last fifteen years‎ about fibromyalgia and sleep that may run contrary to what logic dictates and may be the reasons I am managing to get good sleep in spite of having fibromyalgia, so I thought I should share them.

Of course I could be just really lucky that I am managing to get good sleep…if that’s the case, then I think I’m double lucky because being able to get good sleep when you have fibromyalgia, in my mind and from my experience, is key. Because if I don’t get good sleep, I find EVERYTHING is “off” (and can quickly snowball into days, weeks or months of fallout symptoms)…and if I can manage to be well rested…well then, everything ranges from “not too bad” to even really great!!

But again…I wonder…maybe it’s something I’m doing that’s enabling me to get good sleep?

Let me explain.

As I explained in my previous post‎, when I initially had fibromyalgia I tried to see if I could manage overall without the help of medications first…I figured I would try doing regular healthy things (like exercise, eating healthy, etc) and see how far I could get with those in combating fibromyalgia first before I would think about considering medications. At that time in my life, I had already, in general, grown pretty wary of taking ongoing medications for something like this because of my past experiences with them…I had found while they helped me with one issue, they often created another one for me.

And once again I’ve found, like fibromyalgia in general, going on fifteen years later ‎I am still tackling sleep without medications because so far, I am still managing to get fairly good sleep…AND it’s still improving.

But back to the early years again…I heard of others with fibromyalgia saying they needed maybe thirteen hours of sleep each night, and with the extreme exhaustion I felt, I thought surely (logic dictates) the more sleep the better, and thirteen hours certainly sounded good to me too. But with fibromyalgia having struck me at the time of my life when I had three young children (and combined with my own unflinching determination to not let fibromyalgia stop me from doing everything I had always been doing), I think thirteen hours of sleep each night was just never going to be in the cards for me.

And it probably wasn’t until after I muddled through and struggled with fibromyalgia for many years that I started to believe that just maybe thirteen hours wasn’t so desirable (for me) after all. I have to emphasize that I really don’t know this for sure, because I’m pretty sure I haven’t even had one night of thirteen hours sleep in all these years, so I am absolutely not a credible source to ask how that works for someone with fibromyalgia (really!). Truly, it may work great for others (and I may be missing the boat on this one) so I say more power to them!

But from my own experience, I did come to believe there seems to be an optimal amount of sleep for me to get each night…such that going under OR OVER(!) the amount is not necessarily desirable.

What I’ve found is that anything under six hours on any given night is just NOT GOOD…I wake up feeling like a physical shell of myself, pretty much like a walking corpse really (between the total lack of a sense of well-being and the aches, pains and stiffness) and although I get through the day, I’m pretty much just going through the motions. Anything over maybe nine hours (for me) is also not as great as one would think. I find it seems the longer I lie in bed when we get to that many hours, the more the stiffness and aches set in again and even after I’m up and around for awhile and the ‘first-thing aches, pains and stiffness” have subsided, I’m still not that great the whole day. Yes, I feel rested but I’m stiff and sluggish all day, and will usually have some other symptoms flare up a bit more than usual, making it still harder to function.

Now if I wake up at around the six, six and half hour mark, I actually (guess what?) feel quite good (surprising, right?)…in fact, lots of days I will wake up at that time feeling totally NORMAL with no aches, pains or stiffness AND I feel rested. WOW!!

But (seems like there’s always a but with fibromyalgia, right?), on an ongoing basis though, it seems getting only six hours sleep per night is not enough…it catches up with me and I start to burn out. As I’ve said before, sleep is still a work-in-progress for me; I need to work on getting more (than six or less) on weeknights so I don’t end up burning out and then maybe I also wouldn’t have to try to catch up on the weekends as I do now.

So I suspect if I could get it right, my optimal range for sleep each night consistently is maybe somewhere between seven and eight hours. (Hmm…INTERESTING…the same amount that’s recommended for “regular” people…maybe I should get the point by now.)   And I also suspect that if this is the same way for others with fibromyalgia, each of us with fibromyalgia may be different on where this range is for us and it could be ever changing over the years.

For sure, over the years, if I hadn’t had to keep getting out of bed early every weekday and lots of weekend days I know I would have stayed in bed SO much longer…as we all know, it’s SO tough to climb out of bed feeling SO utterly and completely crappy…but now that I’ve done it for years and seen how it all plays out in symptoms in my body on a day-to-day basis…yes…I do believe there is an optimal sleep amount for me and my fibromyalgia. I’m thinking when I reach the stage of life when I can start my day when I want to, I hope I have the will power to still get up each day when I hit what I believe is my optimal amount of sleep…I’m thinking if I don’t, maybe I’ll take on some commitments that make me do it again (really!).

And when I came to this conclusion that my optimal sleep amount‎ may be more in the normal recommended range and not way more than that, this certainly eased my mind knowing this and it took a major stress off of me…I didn’t have to worry about trying to find time to get extra sleep…and in my case, I was never finding that time anyways, so I could stop feeling stressed that I was failing at this.

What a load off when I realized I could manage getting the sleep I felt I needed to get, just fine (with a few tweaks) with the life I currently had!

(And speaking of a load off…and also from my experience…less stress can only be good for fibromyalgia…very good.)

And let me be clear, when I talk “good” sleep and my optimal amount, I mean that elusive night time full cycles RESTORATIVE SLEEP‎, not the fact that with the chronic fatigue element of fibromyalgia, I can (and would love to) fall asleep at the drop of a hat anytime and anywhere throughout my day.

I’m talking about getting through a good night of four or five sleep cycles and therefore getting that deep-feeling restorative sleep. I’m certainly not a sleep expert but I think I can just tell, when I wake up, if I was able to get that…there’s a feeling of being rested and having a sense of well-being and grounded… that is just not there if I have a night of disjointed sleep from painsomnia or being up helping a sick kid or whatever.

If I do have painsomnia, I really get working on assessing where something is “off” in the mix of things I know affect my fibromyalgia and therefore causing it…am I extra stressed about something?…or overloaded?…or missed a few work-outs?…or most likely if I’m getting painsomnia…all-of-the-above. I usually don’t get pain bad enough that I can’t sleep fairly well through it (cross my fingers)…if I wake up during the night I definitely feel stiffness and pain but it’s not usually the stiffness and pain that actually wakes me, something else does…so when it does this means I’ve slipped up on something and I get looking to figure out what it is so I can fix it and get back on track quickly and not start on that vicious painsomnia circle.

Because, from my experience, it seems to me that restorative sleep may be key for fighting (and maybe beating?) fibromyalgia and it also seems to me that painsomnia could be the death of restorative sleep for me…and I don’t want to find out.

For a long time, maybe the entire first decade I had fibromyalgia, I fell into a bad pattern which contributed to a vicious circle of me rarely getting enough restorative sleep and having the resulting chronic fatigue (and I’m sure lots of my other symptoms) pretty much daily. I thought that was just how fibromyalgia and sleep goes, until about five years ago when I got fed up with myself and decided to try to change my bad sleep habits. I’ll talk about this and the totally unexpected and surprising thing that happened to me after I challenged myself to improve, in my next blog post.

For now, what I know is real is that many years ago I came to think that it’s QUALITY and not necessarily quantity that is key (for me) in fighting fibromyalgia when we’re talking fibromyalgia and sleep…and absolutely nothing since then has made me doubt this. In fact, I am convinced of it more than ever now because of the way I see myself steadily improving over the years as I continue to work on improving my ability to get quality restorative sleep.

As always…these are just my own observations…from my own experiences…but I’m thinking…maybe there’s something here for others to ponder…just maybe someone else can relate and benefit too…maybe you.