“Try to be positive, try to be positive”…what kind of advice is that to give to someone suffering from fibromyalgia!?!

I mean, be positive??…with fibromyalgia???

Well, I’m going to venture to say it’s both RIDICULOUS advice and GREAT advice, all at once, at least that’s what I’ve come to think after experiencing going on fifteen years of trial and error living with fibromyalgia.

So let me explain.

On the ridiculous side of things…I’m guessing someone is not going to just “get positive” because someone else tells them to. I think being positive has to come from within. That’s not to say, someone can’t choose to be positive…I whole heartedly believe they can…I’m just not sure they are going to choose to be positive simply because someone else says to. And then when you factor fibromyalgia into the equation, well…as those of us with fibromyalgia know very well…choosing to be positive becomes a lot tougher choice to make…a whole lot tougher! In fact, having fibromyalgia and having SOMEONE ELSE tell ME to be positive would pretty much elicit the exact opposite…I’m pretty sure I’d be far from positive in my response to them!

So…to be clear…I’m NOT telling ANYONE to be positive…each of us with fibromyalgia has to make our own choice to be whatever feels right to us…to be whatever it is that helps us survive.

Because I know from firsthand experience that it’s tough to feel positive if you have fibromyalgia…very tough.

How can you feel positive when you’re in constant pain? Positive when you’re completely and immovably exhausted? Positive when you can’t sleep properly (or at all) night after night? Positive when you have all sorts of downright scary and disturbing symptoms randomly taking over your body? Positive when you have the same amount of work to get done and only half the amount of time (on a good day) that you feel okay enough to do it? Positive when you’re forever overloaded and permanently behind? Positive when you can’t manage it all and still be able to attend all the social things that you used to? And then positive when you manage to attend some and people still dump on you because it’s still not enough?

Yes, I definitely couldn’t blame anyone with fibromyalgia for not being positive. If we just focus on the fibromyalgia aspect of our lives…which is a huge aspect because for the most part it takes over everything else…really, it’s pretty much all negative.

So, many years ago, when I first had fibromyalgia and I decided to “minimize it”, I think it led to me stumbling onto something that’s ended up being really key for me in fighting fibromyalgia. “Minimize it” was the catch phrase I gave the mind-set that I adopted to fight fibromyalgia by largely not focusing on it. For me, thinking of “minimizing it” became a way to help keep fibromyalgia in a limited role in my life, it helped to reduce its power over me and maintain my sense of well-being. The idea of “minimizing it” is to limit fibromyalgia to just being as small a part of your life as it can…and limit it to being ONLY one part of your life (not overruling everything).

So I think, when “minimizing it” helped me to take the focus off of my fibromyalgia…it therefore helped me to not be so loaded down with the negativeness of living with fibromyalgia. And as the years went on, and I struggled to keep “minimizing it”, I gradually noticed that when I wasn’t doing so well with “minimizing it” and therefore negativeness crept in, my symptoms were worse…and conversely, when I was managing to “minimize it” and therefore wasn’t so negative, my symptoms were a lot better.

At some point, the correlation between being positive and fewer symptoms just became a given for me and I was always striving for ways to keep positive.

So…um…having said all that about it being ridiculous to advise someone with fibromyalgia to be positive…well…on the “great advice” side of it…I also know that over the years of having fibromyalgia, I’ve come to realize being positive IS such a key part of how I manage my symptoms…an extremely key part. Don’t get me wrong…I’m not (magically) walking around positive all the time…can anyone even do that? But I sure wish I was…really…I like being positive…life is so much easier (and nicer) when I can manage it…so I do work hard at it.

And with fibromyalgia, because I’ve seen it makes such a huge difference, I’ve learned to work extra hard at it to get the payoff. Because now that I think about it, I get the GREAT FEELING of being positive and also the bonus of an IMPROVEMENT IN MY FIBROMYALGIA SYMPTOMS.

And I’ve developed so many ways to try to keep positive. Exercising is a big one, I guess because of the increase in endorphins and serotonin that we get from it, plus I believe it helps me to get better sleep, which can only help my mind-set to be more positive. But I’ve also found all sorts of little tricks in the ways I think of things and approach life that I’ll talk about in future posts. And I’m always looking for new inspiration everywhere, in the people I talk to, in the articles I read…even keeping myself open to inspiration, in fact, feels positive.

And I’ve learned that sometimes, just making the choice is all that’s really necessary for me to be positive.

‎Why does thinking positively seem to affect my fibromyalgia symptoms for the better? I’m not an expert, but I totally suspect it has something to do with the effects it has on our brains. If you just search online “positive thinking and brain chemistry”, you can see for yourself and see what you think. And it seems to me that being positive automatically by nature counteracts stress…I think it’s been widely known for years that stress aggravates (and even causes) health conditions…I can definitely tell that stress aggravates my fibromyalgia.

As a matter of fact, I’ve been shocked at how well I’ve done with my fibromyalgia symptoms during some incredibly stressful times even though I wasn’t getting much sleep nor working out as much…which are crucial things that I usually largely rely on to combat fibromyalgia …but because I was just grinding through solely by maintaining a positive attitude. Even with how incredibly important and even crucial that I think exercise and good sleep  are for managing my fibromyalgia symptoms long term, I was able to sail through a time of tremendous stress for quite awhile on sheer forced positive attitude when I needed to.

So…no…I’m definitely not telling anyone else to be positive…that’s each person’s right to be however they want to be. We all have to live‎ with our own set of characteristics and our individual circumstances and do our best to work with what we have at the time.

And for those of us with fibromyalgia, I believe, from my experience, that we have every right to be negative. And at times…that’s exactly how I end up or even what I choose to be.

But…what I know is real…is that overall, throughout all these years, being positive has proved to be way more helpful to me in fighting fibromyalgia than being negative (or even neutral) has, maybe even CRUCIAL to fighting it. In fact, it could be one of the reasons I keep gradually improving. At the very, very least, being positive has propelled me through some really difficult and stressful times when I wasn’t able to do all the other things that I have come to know are helpful to combat fibromyalgia.

So I will absolutely continue my quest to stay positive…because I’ve found that life is just a lot easier when I am able to…a lot easier!

What do I say about fibromyalgia and sleep that everyone doesn’t already know?…I said that in my last post and I’ll say it again!… What do I say about fibromyalgia and sleep that everyone doesn’t already know?

Because all of us with fibromyalgia know that sleep is IT…it’s the crux of everything that is fibromyalgia…isn’t it? I mean, when I really think about it…everything fibromyalgia revolves around sleep…got a bit…not enough…need more…need too much…can’t sleep…can’t stay awake…can’t wait to sleep…it’s never enough…etc etc.

But really, it all simply comes down to…you don’t get some…it’s very bad…you get some…it’s better. Yes, all is better with sleep.

I mean, we all “eat, sleep and breathe” sleep…so really, what can I say about it that everyone doesn’t already know? Again, as I’ve said before…maybe nothing…but as I said in my last blog post, I have made a few (surprising) observations about fibromyalgia and sleep over the course of my almost fifteen years of trial and error living with fibromyalgia without taking any ongoing medications…and on the outside chance that they may have something to do with the fact that I am managing to get good sleep in spite of having fibromyalgia…I thought I should share them.

So let me explain.

As I explained in my previous post, at some point over the years I came to think that there seems to be an optimal amount of sleep for me to get each night (maybe somewhere between seven and eight hours)…such that going under OR OVER(!) the amount is not necessarily desirable. And when I say optimal amount of sleep, as I also explained in my previous post, I’m talking about this optimal amount being the kind of sleep you get when you get through a good night of four or five sleep cycles and therefore get that deep-feeling restorative sleep.  

Now for my first maybe decade with fibromyalgia, I was (unintentionally for sure) helping to sabotage my chances of getting that oh-so-needed restorative sleep. I got in a vicious circle of being so exhausted that I would be doing everything slow throughout the day due to exhaustion and fibro fog…then I would need to stay up until later than I had wanted to (and should) to get everything done that I wanted to or needed to get done for that day…so you know the drill…the next day I would continue to be exhausted…and so on…and so on…it would just continue day after day, night after night, week after week, month after month and yes…year after year.

And as I’ve said before, I’d rather be doing things feeling exhausted and with whatever my current symptoms are, than not be doing the things I feel I need to and I want to do, at all. While this determined approach has certainly had its upside, it also definitely helped perpetuate this vicious circle…but I guess I have to take the bad with the good.

So about four or five years ago I got fed up with myself and I worked really hard on breaking this bad pattern that I had for so many years, pretty much since the onset of my fibromyalgia, because not only was I staying up too late, but the worst of it was, it was also causing me to get disjointed sleep most nights instead of four or five consecutive sleep cycles.

By the time I would get to the end of a long exhausting day, my body would feel like a huge concrete block, just totally immoveable. I would sit down on the couch at the end of the day, stubbornly wanting to finally have a bit of time for myself to watch a little TV and unwind before I went to bed…and forget it…pretty quickly my body would turn into “the block”…and then there was absolutely no way it was going anywhere anytime soon! I would most often just suddenly fall fast asleep on the spot, slumped over on the couch, still sitting up half the time, then wake-up half way through the night and then finish up a thing or two before going to my own bed…causing me to get disjointed sleep again and again and again.

I was rarely getting enough consecutive sleep cycles to get ANY restorative sleep. Most nights I would be so exhausted, I would need to go through maybe a couple sleep cycles on the couch, often around three hours, just to be able to get up and go to my own bed. Yes, it was such a vicious circle…chronic fatigue is just brutal (I know you know!). I was so tired of being so tired.

So I finally (finally!) made some changes in my night time routine and just diligently kept at it, summoning all of my willpower to once and for all break this bad pattern, especially not allowing myself to fall asleep on the couch anymore…and for the most part I was able to do it…because I guess basically I just got tired of living that way and didn’t want to do it anymore (isn’t that always the way?). I knew I was very fortunate to be able to sleep fairly well when I did sleep and I knew that I(!) was the only thing sabotaging myself from getting even better sleep by getting consecutive full sleep cycles…in other words…restorative sleep.

As I said in my last post, 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.

So having broken this bad pattern, most nights now I fall asleep within what feels like five, maybe ten minutes at the most. I’m very tired from pushing through all day, but usually not totally and completely exhausted like before. Once in awhile I’ll nap during the day when I’m fighting through extra exhaustion and/or a flare up of symptoms, but not really that often‎…it’s just hard to find the time for it. And if I wake up during the night, I usually pretty much fall back asleep immediately after changing position to get the aches out.

On the really good nights, I am out like a light until my alarm goes off around 6 hours later on weekdays, and when I wake up I feel rested, like I’ve gotten restorative sleep. On the weekends I try to get more sleep, nine hours seems good right now to make up for the lack of sleep through the week (yes I know…it should be more than six hours a night on weekdays…I am still working on that!).

Now I said earlier that I worked on improving my bad pattern because I was fed up with it…but what I didn’t say…is that I lived with this pattern for many years because I told myself it was probably okay that my sleep was “disjointed” so much of the time…I convinced myself that it was fine as long as I was getting the hours of sleep, that it didn’t matter if they were broken up. So when I began working on improving this bad pattern, I think I just wanted to not be dragging myself off the couch in the middle of the night to go to bed anymore. And since I began working on breaking that vicious cycle years ago, it’s been so great to leave that behind…BUT…in the last, maybe year, something VERY SURPRISING and TOTALLY UNEXPECTED has happened.

I guess it has happened so very gradually that I wasn’t noticing, but awhile back I suddenly realized that my chronic fatigue is now largely gone!

Oh, it will still kick in if I don’t get good restorative sleep at times but I’d say I am moving more towards having NORMAL(!) ENERGY(!) each day. WOW!!

Now this has been HUGE for me to realize this (cross my fingers)…and not to take anything away from that…but as I said in my last post, I definitely could still do a bit better. I have a lot I’m trying to do ‎in life, and I haven’t wanted to compromise more than I have to. So I really push myself (at the expense of more hours sleep at times), more than I should at times I’m sure, but in some ways it also feels like I’m building up my resistance bit by bit by pushing myself, so maybe that’s a good thing. But really…with fibromyalgia…how do we ever know?

Sometimes I get a lot more sleep and I have just as much or more symptoms during that day, so I wonder, what was the point of sleeping extra and losing that time to get things done or do something fun or just relax?…oh well..I guess the restorative sleep still helped my feeling of well being which is so much better than the oh-so-familiar “walking corpse” feeling I wake up to when I don’t get enough sleep.

Yes, if we can get restorative sleep…I mean…what isn’t better than that?

We likely are less stressed overall, handle any stress better, have better energy and focus to get things accomplished, and therefore (in my case anyways) get to bed at a good time to keep getting good sleep. And yes, now that I think about that, there would be snowball-effect benefits of all these things turning into a virtuous circle working for us. And maybe most important of all (I’d be willing to bet)… restorative sleep is vital to a healthy brain, and as apparently fibromyalgia is a “brain thing”, that can only be good for us…likely very good! And yes, especially for those of us with fibromyalgia, good sleep just clearly makes the difference between a wash out day and something a lot better…A LOT BETTER!

So I DO sleep fairly well now…it sounds like better than lots of “regular” people I know who don’t have fibromyalgia! Is it the exercise regimen that I keep up? Or that I wear myself out from being up a lot of hours each day so I really sleep deeply for the shorter amount of time that I do get to sleep? Is it the fact that I limit my alcohol and caffeine consumption or is it the banana that I often eat before bed lots of evenings because bananas are one of the foods that apparently are good for sleep? Maybe, all of the above? Honestly, I don’t really know.

Or maybe…am I just totally lucky I seem to be able to get restorative sleep? Again, I don’t know and likely will never know for sure. But I am not taking any chances by changing any of the things I do. To me, they are such small things to do, small sacrifices to make, for (hopefully) the improvements I’m getting in return…and…I AM determined that I AM NOT GOING BACK. I want to FEEL BETTER FAR MORE than anything else …so I will push myself to do WHATEVER I NEED TO DO.

And…what I know is real is I believe that restorative sleep SAVES ME…getting it is what I need to do.

If I could go back and tell my early fibromyalgia self to work on just one thing, it would be to work on getting restorative sleep. I would say, if you need to exercise, if you need to push yourself to not excessively nap during the day, if you need to figure out how to handle stress better, if you need to limit or avoid alcohol and caffeine and whatever else affects getting quality sleep for you….do it! JUST DO IT! I think over the years this is what I have ended up eventually muddling through by trial and error, to do. And it would have been nice to get here a lot faster…but…I’m SO glad to be here now…and I plan on staying!

And as I’ve said before…I know I often come back to this…I can’t believe I can be the only one who can get here…

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.

I’ve had fibromyalgia for going on fifteen years now and I still don’t know anything about fibromyalgia medications! I haven’t needed to know…I haven’t taken any.

Now that I think about it, this all sounds hard to believe. But honestly, I haven’t asked my doctor about them, researched them on the internet, asked other fibromyalgia sufferers about them…nothing! I guess I’ve seen the odd TV commercial, extolling the virtues of one drug that supposedly helps fibromyalgia…but that is pretty much the extent of my knowledge on the subject. Truly…if you want to know about fibromyalgia medications…don’t ask me.

I’ve just had no interest in using medications for fibromyalgia so far.

So let me explain.

I’m certainly not against using ongoing medications for fibromyalgia…they may be really helpful for some…and at some point (who knows?) I may decide to look into the possibility…maybe I’m missing out on something…but…so far I haven’t felt I needed them…NOT EVEN CLOSE…I haven’t even considered using medications for my fibromyalgia.

Now, this is truly such a personal issue, and each one of us has to make our own decision on this as to what works for them; obviously there’s no right or wrong way and we each have to chart our own path. And if someone finds medications are helping their quality of life with fibromyalgia, then I say that is great!

But I wanted to talk about it because people are always very surprised (and curious) to find out that I don’t take any medications for fibromyalgia. So I’m thinking, possibly my trial and error experiences over the last decade and a half might shed some light for someone else if they are pondering the question of medication, whether they’re already taking medications to combat fibromyalgia or not.

Now I didn’t necessarily start out this way…there was never a conscious decision initially, to not take medication for fibromyalgia. Again, I definitely don’t have anything against medications and if I felt they would help me I would be taking some. It’s just that, I had always seemed prone to unpleasant side effects of medications. In the past, I’d found that while they helped  me with one issue, they usually created another one for me. So by the time I had fibromyalgia, I had grown pretty wary of medications in general, so, as I talked about in an earlier post, I fairly quickly went into my self-described “combat mode” that had worked so well in helping me live with endometriosis years earlier. In a nutshell, my “combat mode” consisted of “doing anything I could do to feel as healthy as possible in every other way”.

So with this, I decided I would first try just getting healthier and/or making lifestyle changes; I would see how far that got me towards managing my symptoms, before I would think about considering taking any medications. And basically…that’s what I’m still doing…almost fifteen years later!

I’ve managed to achieve and sustain a level of symptoms that I am fine living with, basically through healthy living and lifestyle choices…and still to this day…without medications.  AND…I have steadily, gradually improved over the years…AND I continue to improve.

I said in my recent blog posts that I guess exercise is my main medication of choice…and working out is definitely crucial for me…but it’s also the “combat mode” that I live by that encompasses many lifestyle choices and the “minimizing it” mind-set I have which I described in earlier posts…all of which help keep my symptoms to a level I would consider “irritable” and “difficult” at their worst, and never incapacitating. All of these plus some more that I’ll talk about in future blog posts seem to work together to combat fibromyalgia for me, enough so, that I haven’t felt I needed to start even considering medications.

Have you heard that wise observation that states that we may start something for one reason and continue it because of another? Well, as time went on, another reason for not taking medications became apparent to me. I guess I always instinctively worked on getting at the root of the problem, to try to ultimately get rid of the problem (fibromyalgia!). So, day to day, I was responding to my symptoms in such a way as to try to eliminate the CAUSE of the symptom, which would in turn, eliminate the symptom. For example, if I was getting daily back pain…rather than take medication to feel better…I looked for the cause…maybe I was extra stressed…then I would work on reducing stress…and hence eliminate the back pain altogether.

So if my symptoms flared up, I looked for something to adjust…maybe less stress or more sleep or more exercise or less exercise etc etc…the list goes on… But whatever it was, I NEEDED TO SEE WHAT MY SYMPTOMS WERE AND IF THEY RESPONDED TO WHATEVER I TRIED. When I adjusted something, I needed to see how my symptoms were the next day, and the next, and the next, and so on….because I found that it would take a bit of time for the adjustments to play out in my body and improve the symptoms. So over time I saw what my symptoms were like, day in, day out, in response to all these factors that (over time) I discovered affected my fibromyalgia.

I needed to see how my symptoms responded to basically everything I did. So if I was having a really bad day or week or month or several months…I needed to live through it without medications, to actually see what was happening with the symptoms and how and if they were responding to the changes I was making. In the back pain example, if I was taking medication, I don’t think I’d know if reducing stress that day or maybe taking a nap or even working out would have made a difference and hence I should do more of that to eliminate the back pain altogether.

Without medication I could plainly see what was playing out in my body and how things I was doing or not doing were clearly affecting it; basically I needed to see what was happening with my symptoms to see if what I was doing was working or not.

And as I saw my body react to my lifestyle choices in the form of all these fibromyalgia symptoms, over time I came to see that my body was reacting when I had too much mental stress or not enough sleep etc etc,…so I felt my body was sending me a message…I should cut down on mental stress or get more sleep or whatever. It began to seem to me that taking medications would, in fact, allow me to keep doing the things that were stressing my body. Do you understand what I mean? For example, I could remain mentally stressed and take medication to reduce the resulting symptoms…I would likely feel better from the medication in the short term but my body would STILL have the underlying stress from the mental stress that I had not addressed.

So basically, I came to think (it seemed to me) that perhaps medication would allow me to keep doing the “wrong things” that were stressing my body by providing a band-aid for the resulting symptoms. Which led me to the next thought…what if I keep doing these “wrong things”? I wonder… if they are putting stress on my body…and I find ways to keep doing them instead of addressing them…what then? Will my body break down even further, and then maybe I would have something even worse to deal with?

So I try to heed the warning messages that I feel my fibromyalgia symptoms are sending me. And while taking medications may very well be really helpful for others, I know myself and I know that if I took medications to alleviate my symptoms I would end up overdoing it (even more than I already do at times!).

THE SYMPTOMS TELL ME WHERE TO DRAW THE LINE.

So, yes…I’ll admit I still sometimes push it and cross the line…but I generally know where the line is…and when to (figuratively speaking) “give myself a smack upside the head” and get working to toe the line again.

And I’ve found there’s another aspect I really like about not using medications, but using my own lifestyle choices to manage my symptoms. I feel that if I am controlling the management of my fibromyalgia symptoms through my own (normal healthy) means, it can’t be taken away from me. I don’t have to wo‎rry about something changing with a medication, that it no longer works for me so I have to start experimenting with a new one all over again, or it’s no longer available for reasons beyond my control.

Yes, maybe this is a personal thing, but I definitely like it that, for the most part, I feel as if I KNOW HOW TO and I AM controlling my fibromyalgia myself.

‎Now, do I feel perfect all the time?…NO…far from it at times…and I’ll take the odd acetaminophen or ibuprofen once in a great while…but I always want to be working on the cause of the problem, to try to get rid of the symptoms altogether…I’m aiming to feel good on my own merits. And I usually CAN get rid of the symptoms this way, for a time anyways, until some flare up again and I need to adjust something in my life again.

But overall, in the big fibromyalgia picture, I AM improving from year to year!

Yes, as I said before when recounting my story, “Without medications to help me feel better I have learned how to make myself feel better on my own”. So far I’ve been happy I chose this route…if I wasn’t I could change it at any time.

What I know is real is that fibromyalgia is not easy regardless of what path we take, but we CAN find our own way to have some CONTROL and some POWER over it….I know because I have…and I absolutely believe others can too…like maybe YOU.

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WHAT DOESN’T KILL YOU MAKES YOU STRONGER…I know it sounds cliché but it’s hard for me to believe that line was ever more true than it is in describing exercise and fibromyalgia!!

But I’ve said it before and I’ll say it again…I am NEVER EVER sorry I worked out. In my previous post when I talked about my experiences with exercise and fibromyalgia, I said that statement and it’s something I think about often…because it’s the thing I think every time I don’t feel like working out but I know I should. And then, probably ninety-nine percent of the time, I DO work out…because…I know it IS true…I am NEVER EVER sorry I worked out…and this time will be no different.

Sometimes I wonder if there’s a mistaken belief, by others who aren’t in the practice of regularly exercising, that I have some different dimension to me, whereby I WANT to work out consistently. I’ll put that to rest right now…I don’t. I can’t speak for others who routinely exercise, but to me, a good analogy is that ‎it’s like a job…you don’t necessarily want to do it or even enjoy it at times, but you do it because you want or need to get THE RESULTS. This is exercise for me. I’ve said I’m a diehard for working out…it’s because I want (and now with fibromyalgia…I NEED) the results…both physically and mentally.

But exercise and fibromyalgia are not an easy pairing…which takes me back to…what doesn’t kill you makes you stronger.

So let me explain.

In my last blog post, I talked about how I stumbled onto the discovery that exercise was good for my fibromyalgia and then, that over the years I’ve come to believe that it’s, in fact, CRUCIAL for me in managing my fibromyalgia symptoms on so many levels.

Now, even though on this website I’m trying to tell of my experiences with fibromyalgia in a deliberate meaningful order from post to post, I try to write each blog post so that if someone read only that post, it would be meaningful and make sense to them on its own. However, in this case, if you haven’t read my last post introducing exercise and fibromyalgia, it would be really helpful to you if you went back and read it now so you will fully understand the basis (of what I’ve come to believe after over thirteen years of my trial and error experience) for the specifics I plan to expand on in this post.

So…early on in my fight against fibromyalgia, I read a truly informative book that enlightened me about the fact that fibromyalgia symptoms “waxed and waned”. Prior to that I was afraid to push the boundaries because I (mistakenly) believed that every time my symptoms worsened, I had lost ground permanently. This fact was an inspiring game changer for me…I realized I COULD push the boundaries somewhat and see what I could do…without being so afraid of causing irreparable harm. For me, it was kind of like when the flag drops to start a race…I was off!

Now, each INDIVIDUAL should develop their OWN exercise plan depending on their OWN capabilities and what they CAN MANAGE at the time and in accordance with their PHYSICIAN’S APPROVAL.

But I wanted to share some specifics of my experiences with working out over the years, because whatever someone’s level of fitness or type of exercise chosen, we may be encountering similar things and others may be able to draw from my experiences. Plus, if someone is hesitant as to what’s even possible as far as exercising with fibromyalgia and perhaps afraid to overdo it…I can at least say what I do and what I believe I know from my experiences…which may be of some help to someone else. It’s all very personal for each of us so it’s hard to know if my experiences will translate for others, but I will put them out there in the hopes that they will.

So I’ll just start with this…I push myself…I generally still push my limits with my workouts…I work out with the same intensity as I always did (pre-fibromyalgia). I’m not saying this because I think or even recommend that others need to push themselves as hard as I do (everyone needs to go at their own pace!), but I’m saying this to say that it’s been possible for me…and I don’t believe it’s been harmful to me in terms of my fibromyalgia. In fact, I’ve been able to maintain the same level of fitness I’ve always had, and I am still gradually improving over the years in terms of my fibromyalgia symptoms.

Now, no-one can ever know for sure but after over thirteen years of experimenting with exercise and fibromyalgia, I believe that the fact that my fibromyalgia seems to be improving is not in spite of my working out, but maybe because of it!

So…I’m thinking…if I can keep up a fairly strenuous exercise regimen, wouldn’t it be likely that others with fibromyalgia can do some exercise at whatever level they are comfortable with without harming themselves in terms of fibromyalgia, in fact, more likely helping themselves? I don’t know the answer…each individual will have to judge that for themself. But, as I said in my last blog post, from my experience over time, “I came to the realization that I don’t believe the pain and other symptoms I was having from fibromyalgia are symptoms of anything ACTUALLY wrong with my body that would be a viable reason why I couldn’t keep working out”. To be clear, I don’t believe I will do harm working out because I don’t believe there is anything physically wrong with my body. Fibromyalgia makes you feel like there is, but from my experience of over fourteen years of living with fibromyalgia, it seems to me that there isn’t.

So I have ignored the way I feel for the most part and continued to work out full steam anyways (through aches and pains, exhaustion, my body feeling like a concrete block to move and a myriad of other symptoms) AND I am always able to get through the workout AND I actually usually feel better IMMEDIATELY (again, if you haven’t read my last post, I explained this “shocking” discovery there). In addition, I get all the other well-known health benefits, short and long term, of exercising.

But make no mistake…it’s NOT easy…so…now do you see what I mean?…what doesn’t kill you makes you stronger?

Just to give an idea of what I’ve personally found possible and manageable… I currently work out about fifty (maximum effort) minutes per day four or five days a week (always weekdays, first thing in the morning). I take the weekends off, and at times I take Wednesdays off or do a light workout that day, to rest my body midweek and maybe get a little extra sleep or an earlier start to my day instead. I used to run for every workout up until about three or four years ago. I could have kept that pace up no problem, but I switched to a more rounded workout to get in better shape and because I wanted more variety for a change. So now I do two high intensity interval workouts on my treadmill and two or three strength training workouts each week. I put the maximum effort in, for the time I work out, so I’m going full steam for approximately fifty minutes. Right now, for me, this seems to be a manageable level…I can do the workouts no problem and I am not overdoing it and burning out over time.

Besides, I’m only willing to put so much time into it…I have a busy life (and I have fibromyalgia!) and remember?…it’s a means to an end for me…I’m hooked on the RESULTS.

I keep this up, day in, day out, week after week, year after year (like brushing my teeth…remember…from my last blog post again). But once in a rare while I end up missing a few workouts give or take, like over the Christmas season or a vacation. I don’t really get out of shape in that short period of time but when I get back to it, it can make the workouts somewhat tougher until I’ve been back in the regular routine for a bit. (And by the way, a flare up of fibromyalgia symptoms can have the same effect.) I find that’s when I really have to apply a delicate balance…of gently pushing myself with the working out to get back to my normal level…but not overdoing it, because it does tire me out more then…however I need to do it because I know it’s the only way back. After many years of this, by now I know this routine well; I know there are better days coming again, so it’s easier to feel confident in what I’m doing and keep gently pushing my limits to get back in shape.

It can be tough at times to “get back”…I’ve often thought for someone who has fibromyalgia and hasn’t been exercising at all…this is what it would be like for them to start exercising. I often think how hard that road would be, because I am just trying to “get back” and it’s hard enough. I think then it would be especially important, if they and their doctor agree they should exercise, to start slow and increase at the pace that they can handle so that they just gently keep nudging themselves forward. Once again….what doesn’t kill you makes you stronger…comes to mind.

Okay…and speaking of “what doesn’t kill you makes you stronger”(again)…here’s another lovely(!) little thing that occasionally happens to me during my workouts…I’ll tell you what I do and if it happens to you…you be the judge. Every once in awhile during my high-intensity interval workout on my treadmill (and I think it is more likely to happen if I’ve missed a few workouts and am trying to “get back” again, but not always), it will suddenly FEEL LIKE I’ve fairly badly pulled a muscle. I’ll be running at a pretty good pace when suddenly…TWANG…the whole hamstring muscle (or maybe calf) will feel painfully pulled, almost like it may give out! I say “feel like” because I don’t believe that I did in fact pull a muscle…because it’s always the same.

I wonder “Did I pull a muscle!?!”…and then, oh yes, I remember all the other times this has happened…so, I carefully keep running at the same pace waiting to see if my leg will take it…and once again, I’m able to keep running, full strength and full speed! And if it hasn’t stopped hurting by the time I finish and get off my treadmill, it stops hurting shortly afterwards! So, by now, after years of experience I’ve learned that I can pretty much ignore these “pulled muscles”; they go away so fast that I know they were a fibromyalgia symptom and not really a pulled muscle. I mean…I’ve HAD pulled muscles before in my previous “normal” life…they were there for close to a week!…and they inhibited everything I did for the whole week…I couldn’t move normally right away and I wasn’t pain free within minutes!

Now I’m definitely not saying anyone should just ignore pain when they are working out…that would for sure be irresponsible of me. Certainly we should pay attention to any pain and if we choose to proceed, then proceed with a GOOD AMOUNT OF CAUTION (as I have always done) and see if there’s anything to it.

The reason I mention this at all is that I’ve heard of others with fibromyalgia experiencing something like this and then stopping working out altogether because they believe they are damaging their muscles when this happens, but this doesn’t seem to be my experience. I’m certainly not an expert and anyone should always consult with their doctor to get a medical opinion, but I hate to hear of someone with fibromyalgia stopping an exercise regimen when maybe they just needed to take it a little easier and keep persisting to get to a comfortable level of exercising.

And speaking of keeping persisting, I feel like “what doesn’t kill you makes you stronger” pretty much characterizes every weekday morning for me. I will only work out in the early mornings, usually first thing before I do anything else‎, because basically I am busy and I don’t want to (and won’t) use any of my other time during the day or evening to work out. So…since I also WON’T MISS a workout (well, practically never…I depend on it to combat fibromyalgia)…that leaves only early mornings. But…I am so busy that I usually don’t get to bed as early as I should (I’m working on that). So…inevitably it (too) often comes down to a choice between getting more sleep‎ or getting up and working out. (…we’re talking often less than six hours sleep…oops…)

I’ve had to make that tough choice far too many times over the years, daily at times, so I’ve debated it with myself many many times…which is the better choice? Both seem so very crucial to managing fibromyalgia symptoms, good sleep and exercise. Quite a few years ago, I concluded, from my years of experience and though I know I really should get both, if it comes down to it and I am in that situation (totally my fault of course), I am better off overall going with less sleep and doing the workout, even though it almost kills me to climb out of bed and force myself to go start the workout. (…what doesn’t kill you makes you stronger…) Fairly soon into the workout I usually feel way better and when I’m done, I feel great AND I feel better all day and overall than if I had gone without a workout and opted for that bit of extra sleep. I am NEVER EVER sorry I worked out. If I can I’ll try to pick up a bit more sleep in a nap sometime during the day or evening or catch up on the weekend.

The reason I talk about this is, again, it shows that from all the trial and error years I’ve had of living with fibromyalgia, I’ve come to decide that, even with how absolutely “life-saving” good sleep is for my fibromyalgia, in a pinch I will pick the exercise nine times out of ten, day after day because I know that exercise is THAT crucial for me in fighting fibromyalgia. This is true in the short run and I’ve come to suspect that exercise is a major factor in the way I am gradually improving over the years in the long run as well.

It feels like it’s slowly, steadily, pushing back against my fibromyalgia and succeeding in building me and my resistance back up over time.

Incidentally, on the topic of morning workouts, though it was out of necessity that I originally picked this time slot, I’ve come to really appreciate quite a few things about it. I originally switched to working out in the early mornings because with raising young (any) kids, that was the only time I could be (almost!) guaranteed of uninterrupted time to get a workout done in my home workout room. But now that I’ve done this for years, I know I will try to keep with this routine because I consistently have the energy to get through the workouts quite well first thing in my day, even if I didn’t get enough sleep. I always seem to pick up the energy shortly into the workout whereas later in the day I think the tiredness sets in more and I often can be struggling to get my responsibilities done due to brain fog, tiredness or just plain exhaustion, so I wouldn’t get time for the workout.

When I do it first thing, I’m putting my responsibility to myself and my health first…I suppose it’s the equivalent to the financial idiom, “Pay yourself first”.  And overall, I guess it kind of “kills two birds with one stone” for me…besides getting my workout done, it’s also my morning routine that gets me ready to face the day, physically (and mentally too).

I’ve tried to lay out some specifics of my own trial and error exercise experiences over the years simply to show what I’ve found POSSIBLE while fighting fibromyalgia, because just maybe, that may help someone else to stay motivated to try to keep up an exercise routine…and maybe it may save someone all the same trial and error experiences I’ve had to go through…hopefully some of what I’ve learned can give others some insight that may help them if they hit any of the same issues I’ve hit up against.

But I can’t emphasize enough, it’s been my experience that anyone who is trying to keep up an exercise routine (with or without chronic illness) needs to find a type of exercise and a schedule for it that works in THEIR LIFE for THEM. It’s no help to them if they aren’t going to keep it up. They should latch on to whatever they can find that will help keep them MOTIVATED. It might be incorporating things they like in their routine or tracking their progress in some way; I listen to my MP3 while I watch the morning news bylines on TV as I work out, plus I find it motivating to track my heart rate progress on my treadmill. Changing up things can help too…even adding new songs to my MP3 always gives me an added boost in motivation for quite awhile. And by exercise I don’t necessarily mean the stuff I do, that’s my thing. Each individual should PICK WHATEVER THEY THINK THEY’LL DO…I know lots of people love yoga, walking is fantastic for us, the possibilities are endless. They have to like it enough and it has to be realistically workable in their life, specifically in terms of how much exercise and when they will fit it in. If they overshoot on either of these…don’t quit…ADJUST!

Having fibromyalgia, I’ve found I can definitely overdo it; sometimes I know it right away but more often I’ve slowly been burning out over time. So I adjust. We each have to exercise at a level that fits with where our illness is at the time, and my experience has been that that can keep changing. As I said earlier, I push myself somewhat when I’m not up to it, to help keep my fibromyalgia and work out level at the status quo, so I’m not falling back in either because it can be a snowball effect in the wrong direction. And as I said before, for me, someone who has worked out for many years now, it can be hard to “get back” when I’ve let up a bit, so I imagine starting out would take a great deal of extra persistence…but I can tell you my experience has been that it does get easier as you get more fit…just like “regular” people.

What doesn’t kill you makes you stronger…

Yes, what I know is real is that I plan to keep working out for the rest of my life, or for at least as long as I possibly can…it is my all-in-one medication of choice…who knows, I’ve heard of people in their eighties running marathons! And I believe it’s my first and last line of defense against fibromyalgia. This can seem daunting, but I like the fact that I will always be fit and healthier for it, and I will reap all the other long term benefits that go along with that, mentally, physically and overall health wise. Besides, the way I look at it…the time is going to pass anyways, one way or another…how do I want to spend it?…and where do I want to be at the end of it? The word that totally resonates with me to describe what exercise does for me is…it “normalizes” me…in so many ways…physically it’s phenomenal and mentally it grounds me. And I absolutely can’t believe I can be the only one it does this for! ‎

And speaking of marathons, I’ve sometimes wondered…could I train for and run a marathon? I don’t really know and maybe it’s just wishful thinking. I know I don’t have the time or desire to find out right now…but the fact that I have fibromyalgia and it’s not out of the question to me as to whether I could manage that…speaks volumes.

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I know, I know…no normal person wants to exercise when they are sick, exhausted, in pain, dizzy etc. etc. … and I’m SO glad I wasn’t normal! Because if I wasn’t such a diehard for working out (any sane person would have went and lied down somewhere when they felt that crappy!), I would have NEVER discovered the absolutely huge game changing benefits of working out in my fight against fibromyalgia. I mean…exercise and fibromyalgia!?!

So let me explain.

I’ll admit I stumbled onto the fact that exercise is so beneficial in fighting fibromyalgia (for me) and for years I wondered just how much of a factor it was in how I was managing to function fairly well with fibromyalgia. But I’ve come to think it’s a very key factor for me and I’m definitely not going to take the chance of stopping it anytime soon.

And I think I’ve been incredibly lucky that I stumbled onto it right away, during the early stages of my fibromyalgia onset. I started working out to combat it before I even knew what “it” was. I was feeling helpless and distraught, part way into a three month wait for an MRI to help diagnose the serious and scary symptoms I had been experiencing, when it struck me that I could do something about it NOW…I didn’t have to wait helplessly…I could go into my self-described “combat mode” that I had used to fight endometriosis years earlier.

In a nutshell, my “combat mode” consisted of “doing anything I could do to feel as healthy as possible in every other way” and a big part of that for me was working out. But…doctors were saying I likely had MS and I was devastated thinking (based on a close family member’s experience with the disease) that I likely would no longer be able to work out…until…I became inspired by someone.

At the time, there was a popular talk show host who had MS for years and he was clearly a super fit person that I could see must keep up a regular workout regimen. So that told me…IT’S POSSIBLE! And that was all I needed to know…I stepped up my working out again. I was going to work out no matter what it took!

Okay…and now here comes the shocker (for me, anyways)!

I’ll set the stage first…I was just wanting to keep fit, I hoped that maybe it would help me combat fibromyalgia in some roundabout way if I was healthier overall. I was just trying to feel as healthy as possible, to possibly…hopefully…minimize the discomforts and help keep me healthier in the long run.

So I remember it clearly…feeling really crappy…lethargic, almost immovable really, kind of numb in some areas, my head didn’t feel right, almost dizzy…I climbed on my treadmill, doggedly determined to get through the running work out in the name of my long term health.

Well, to my total shock, it actually made me feel better… IMMEDIATELY!!!

Shortly into the run (and I only ran for maybe half an hour, three quarters of an hour at the most) I started to get energized to do the run, and by the time I stepped off the treadmill when I was done…I felt (oh, the joy!) totally NORMAL!!

That was over thirteen years ago and to this day, for the most part, working out still works that way for me. Sure, it’s not a cure all. The symptoms come back here and there and sometimes fairly quickly…because working out is not the only thing in the mix. Other factors certainly affect my fibromyalgia symptoms. But I’ve thought a lot about it over the years, through all my trial and error living with fibromyalgia and I truly think it’s a major factor…from the immediate benefits of often getting rid of current symptoms to the longer term benefits of being overall healthier, to say nothing of the benefits I am getting from the boost in serotonin levels and endorphins!

I truly believe exercise has been (and continues to be) crucial for me.

And it certainly hasn’t hurt me…I mean…how many ways is exercise beneficial!?! (AND…I’m gradually improving over the years…) I’ve had to work to find that right balance for me though. I’ve overdone it for awhile and started to feel burnt out, so I’ve then cut it back…and I’ve let up on it too much and started to get more fibromyalgia symptoms so I’ve had to work to step it up again. And yes, as anyone with fibromyalgia knows, working out with fibromyalgia can often be a lot easier said than done, so in my next blog post I’m going to talk more about my specific experiences working out, although everyone should develop their OWN exercise plan depending on their OWN capabilities and what they CAN MANAGE at the time.

So because I was such a die-hard for working out and because early on I accepted that I had something to deal with from then on AND I decided I was still going to keep doing things, with pain and exhaustion and whatever other weird symptoms came with it…I kept working out. Right from the start I decided I’d rather do things like that than not do them at all.

So as I persisted in working out, over time (and as a result of what I experienced from working out), I came to the realization that I don’t believe the pain and other symptoms I was having from fibromyalgia are symptoms of anything ACTUALLY wrong with my body that would be a viable reason why I couldn’t keep working out. Does that make sense? I mean…I don’t think the symptoms are an indicator of anything physically wrong with my body, but more an indicator of something mentally, emotionally or lifestyle being temporarily “off”, so THOSE are the things I need to work on…and guess what helps me with respect to those things?…exercise!

So basically, for the most part…I ignore the pain and other symptoms…and keep working out…and I keep experiencing the benefits!

Besides, if I let fibromyalgia take something this important (my workouts) away from me, I would for sure feel more helplessness in the face of fibromyalgia (no…I control it!). I feel powerful and strong physically from working out and this makes me feel powerful and strong mentally, which is a huge help in fighting fibromyalgia.

‎I can sometimes feel pretty “down” getting on my treadmill early in the morning with a stiff aching body and tired…I often have to force myself down to my basement to get started, and sometimes, on really tough days, force myself through the whole thing…but I always get off feeling GROUNDED, UPBEAT, CONFIDENT and READY TO FACE THE WORLD (and blissfully “normal” feeling, physically!)!

And what I know is real is that I am NEVER EVER sorry I worked out. By now, I look at it like brushing my teeth; it’s just a necessary “given” that I have to fit into my routine each weekday because overall it’s better for me.

Yes…because I was such a diehard for keeping fit and persisted when not many likely would, I feel extremely lucky to have stumbled onto this important connection for me (and maybe you too) between exercise and fibromyalgia in the first place…but now that I know…I definitely won’t be stopping!

I keep thinking I’ll write about the various things I do to combat fibromyalgia, but then I realized that on their own individually, they are just things that, sure, they seem like good things to do, but it’s hard to make some new compelling argument for each one on their own (but I’m sure I will try at some point). It just seems like lots of the same old stuff that everyone knows is a good idea…exercise, get some sleep, cut down on stress, etc etc…blah, blah blah blah, blah…

And, after years of my own self-prescribed trial and error efforts with myself as the experimental guinea pig, I can say I ended up doing lots of those “good” things…because they helped.

But, it wasn’t until after years of doing them, that I saw a BIGGER PICTURE…that it occurred to me, as to what SEEMED to be happening in my body and why I SEEMED to need to do them.

So let me explain.

Fibromyalgia…I’ve never been one to delve into all the specifics of what causes it, or even what it is. Yes, I’ve seen various explanations of what is known and/or believed to be known about it over the years and I admit I have my times here and there of wondering (and venturing guesses) about what caused my fibromyalgia, but for the most part (and this is a personal thing), quite frankly…I just haven’t cared that much. Right from the start, even before I had a diagnosis, I pretty much just got on with trying to live with it. I have things I want to do in life. I care more about functioning the best I can with it.

So I spent years muddling through and struggling, slowly figuring out what helped (and what didn’t). At some point I ended up with some definite thoughts on what things I thought were key things I should be trying to do to have the best quality of life I could have (with fibromyalgia).

And then an idea struck me as to what it seemed like I was doing when I did all these things to keep everything (fibromyalgia) under control. Now this is purely my idea and it’s only based on what SEEMS to be happening to me, but I find it useful to think of it in this way. It gives me the reason to do the things that I know I should do but are (really) hard to do…like drag my aching body out of bed and down to my basement early each weekday morning to work out.

It suddenly struck me that it seems like some things that are automatically regulated in other people’s brains each day don’t happen automatically in MY brain…it’s like my “automatic mode switch” got broken so I have to ”manually reset” it every day.

And I have to do all these things to reset it.

For example, say a “normal” person doesn’t get enough sleep…their automatic system kicks in and they still wake up with a sense of well-being and their body feels fine like usual but they are tired all day (I remember…I used to be “normal”). Now if I don’t get enough sleep, I wake up hurting all over (more than the usual) with (instead of a feeling of well-being) a feeling of being (the best I can describe it) a walking corpse. This lasts all day (or really, until I can get enough sleep), all the while being so exhausted I can hardly think and struggle to get much of anything done. I need to get enough sleep to “manually reset” my sense of well-being and general functionality. It doesn’t happen automatically for me anymore.

And resetting each day involves a real balance of trying to do a number of things (which I’ll keep talking about in future blog posts). If I don’t do one, it can affect another…like if I don’t work out, it can make it harder to get good sleep that night, then I get so exhausted, it gets tougher to get anything done the next day much less work out, and then I’m behind on everything and still exhausted, so then I’m extra stressed and finding it hard to be positive…and so on…and so on…(you know the drill…)   ‎

‎So I find I have to work hard at being as disciplined as I can because these key things seem to work together and depend on each other. If I didn’t sleep well and I’m exhausted, I still force myself to work-out. And when I slip a bit (or quite a bit), I just keep (sometimes pretty slowly) chipping away at it to get back on course, because basically, after all this time, I know it’s the only way.

Now that I think about it, this kind of makes sense when you consider that fibromyalgia apparently originates in the brain. Right from the start I’ve always sensed it’s a brain thing‎; it feels different than anything I’d ever felt before, hard to describe but just an odd difference to it.

And now that I think of it, all of the key things in the mix of things I find help with fibromyalgia DO have positive effects on the brain. It seems like I am going to the root of the problem then, when I focus my efforts on these things because they affect my brain, things like working out to boost serotonin levels and endorphins, reducing stress and getting restorative sleep to name a few key ones. I find if I do that, the positive results seem to play out in my body, with the result being a lot less bad symptoms. And when my symptoms do flare up, I take inventory of these key things and see which ones I’ve let slide a bit or just need more work on and then I work to improve and “manually reset” myself again.

So I guess then, pain and symptoms in my body, for me, is a signal to (in fact, I guess) work on my brain. (IMPORTANT NOTE: This is NOT the same as saying “It’s all in my head.”!!!)

I can’t speak for others, but this is what it seems like to me and what I know is real is that thinking that I need to keep “manually resetting” helps me to force myself to keep doing the things I have found have a real positive effect on my fibromyalgia symptoms. And when I manage to do that, then the bonus kicks in…what I have found is that then I get the flipside of the vicious circle that we so often find ourselves in with fibromyalgia…it becomes a “virtuous circle” in that the more you force yourself to do the key things that help, the better you feel and the easier it gets to keep doing those things, so the better you keep feeling!

I know this, for real, because it is happening to me.

Do you get inspired by others? I mean, really inspired…like you take it to heart…and change your life because of it? Because I definitely do. I can look back and know specific instances in my life where someone inspired me…and it’s always in a certain way… and I knew it right away…and I took that inspiration and ran with it.

Each time I changed my life path because of that inspiration.

So let me explain.

Basically, with me, it’s always the same. I have some preconceived mind-set about something being a certain way…then I notice someone doing it different, doing what I thought wasn’t possible…and that changes everything for me! Then I know that if someone else can do it, then that means it’s possible(!) and…if it’s possible, then I can do it too.

Other times it’s that I don’t think it’s possible for me, even though I see others doing it. I get a subconscious mind-set about something…like if others are able to do something, that’s THEIR life… but it’s somehow not mine. (Does this ever happen to you?) For whatever reason, I’ve sold myself short or maybe just got stuck in a certain way of thinking…until I see someone that inspires me in a way that I suddenly see it different. I have that “light bulb moment” of inspiration…WHY CAN’T I??? And then, I realize…there’s no reason I can’t have that life too…I CAN…just go do it! Make it happen. Grab that life for myself!

Yes, I definitely get inspired by others and there are some specific times I have been inspired by others that have made a huge difference for me, both directly and indirectly, in learning how to live with fibromyalgia .

The first time I can remember this “inspiration moment” distinctly happening was when I was in second year university. I had been out for drinks with friends the night before and the waitress that served us was a fourth year student, I’d seen her around. She was an athlete and I was thinking how great it must be to be that fit and have that athletic lifestyle. I played a lot of neighbourhood sports as a kid, but outside of the required Phys Ed classes in high school, I hadn’t done anything athletic in years. I just didn’t think that was my life.

As I walked along the sidewalk the next day, alone with my thoughts, I had this uncomfortable feeling (about her) still nagging at me. I didn’t like being dissatisfied with myself or my life. And then…I can still remember it clearly…it really was like a light bulb went on…and it feels like I could have even said it out loud…WHY CAN’T I BE ATHLETIC? (as in…I CAN…and I’m going to!) And then I started working out and I DID become athletic…and I still am.  (And if you can’t guess…besides being helpful in fighting endometriosis soon after that, years later, working out also became immensely helpful in fighting fibromyalgia, which I’ll get to in another blog post soon.)

Since then and after I developed fibromyalgia, there have definitely been more times I was really inspired by others in such a way that it was game changing for me in fighting fibromyalgia.

Before my diagnosis, doctors thought my symptoms resembled MS symptoms. My only experience with MS was a close family member who had slowly deteriorated over the years and as I tried to deal with what may lie ahead, I felt especially devastated over the thought that I would no longer be able to do the working-out that I had come to thrive on for physical and mental benefits.

But then, another inspiring person changed my life. At the time, there was a popular talk show host who had MS for years and he was clearly a super fit person that I could see must keep up a good work-out routine.

So that told me…IT’S POSSIBLE! And I was inspired!

I stepped up my working-out, determined to still keep fit. (And I felt I’d be okay now…this was absolutely a game changing life-line for me at the time.) When my diagnosis was not MS and turned out to be fibromyalgia, the working-out had already proved to be hugely helpful in combatting fibromyalgia in a real proactive way, so I just kept doing it.

But still, during my first while with fibromyalgia I got in my first of many(!) vicious circles. I believed (mistakenly) that fibromyalgia was gradually degenerative. So my symptoms would get worse, then I would mistakenly believe I had lost that ground for good, so I would stress, then my symptoms would get even worse, so then more stress, and so on. I was steadily going downhill…until…I bought a book about fibromyalgia. I found it to be truly positive and inspiring, with the most inspiring of all being that it stated the (new to me) fact that fibromyalgia symptoms “waxed and waned” as they put it.

As you can guess, this was SO INSPIRING (compared to what I had been thinking!) and a huge relief and absolutely another game changer (probably the biggest one). NOW, if my symptoms were worse, I could relax because I knew it could be temporary and in fact, I learned if I did relax, they often were temporary!  I could also push the limits more with what I did, because I was no longer so worried about losing ground that I couldn’t get back.  This totally changed how I approached fibromyalgia from then on.

Yes, what I know is real is being open to being inspired by others has absolutely been a game changer for me in my fight against fibromyalgia and in my life in general. I plan to keep being open to being inspired by others to keep seeing ways to change my life path for the better.

So, back to my original question. Do YOU get inspired by others? Are you open to being inspired by others?

I mean, because, I highly recommend it. It’s easy for me to be open to being inspired by others because I don’t think in terms of others being able to do things, but I can’t (do them). I just think that we’re all just humans, and yes, while we’re all unique individuals‎, we’re also all the same. If someone else can do something, I find it inspiring because that means it’s possible (at all), so…so can I. That opens the flood gates for me…I see the possibilities. (Then again…there are other times I’m optimistically trying something that I DON’T know is possible…but that’s a topic for another post!)

Yes, I have confidence to think that way I guess, but it’s not that I think I’m better than anyone else…. it’s that I think I’m LIKE everyone else. I think we’re all equally capable. We’re all more the same than different. Likewise, if I’m able to do something, I think others can too…I think YOU can too.

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Don’t focus on the fibromyalgia…”minimize it”, I wrote in my last blog post Minimize It. The idea is to limit (or “minimize”) fibromyalgia to just being as small a part of your life as it can be…and limit it to being ONLY one part of your life (not overruling everything).

Limit it. Compartmentalize it. “Minimize it.”!

I know, I know…if only it was that easy…  It isn’t easy, but for every bit that I manage to do it, I get far more in return.  For me, thinking of “minimizing it” has become a way to help keep fibromyalgia in a limited role in my life. I think of it as being just one (small) part of my life and this has helped to reduce its power over me.

(Fibromyalgia doesn’t define me.)

But even more than thinking of fibromyalgia as being just a small part of my overall life…I try to go one step further and… actually I try not to think of it at all!

So let me explain.

Now, that’s pretty difficult to not think of fibromyalgia while experiencing symptoms day-in day-out, but there is one thing (and this is my own personal preference) that has helped me more than anything else to not to be so preoccupied with my fibromyalgia symptoms.

I’ve been somewhat secretive about having fibromyalgia (and even with those that know, I don’t talk about it much).

Again, this is a personal thing…different things will work for different people of course and there are definitely positives and negatives to this approach. The biggest negative that I can think of is it possibly limits support that you might get and that may be a deal-breaker on this idea for many. But I wanted to mention it because, overall, I’ve been happy I chose this route.

Granted, there are times when someone complains I’m late for some party and I think…if they only knew how hard it is for me to get there at all!…but how could they?…since I don’t tell anyone! And sometimes I just wish people knew how hard I have to work just trying to have a “normal” life…but… I can’t have it both ways!

I didn’t start out to keep it a secret.

But I’d been down this road before, more than once…distraught, dealing with symptoms for months waiting for a diagnosis of some sort. Telling people… I am upset and worried (myself) at that point, and having others know and ask‎ about it (even though I know they are well-meaning) only adds to my upset (again, my personal reaction).  I see my worry mirrored on their faces and that makes me feel more worried.

Their sympathy makes me feel weak and vulnerable…that isn’t how I need to feel to fight this thing…I need to feel strong and invincible. Also, they draw my attention to it when I may be trying to forget (I may not want to be reminded of and talk about my health problems at a party!).  And, what if, when I find out what is wrong, it’s not something that I had wanted everyone to know? But because I’ve told people something was wrong, now I have to explain more…

Yes, I learned a long time ago, that I prefer to keep it to myself till I find out exactly what I’m dealing with.

So by the time I reached the fibromyalgia stage of my life, I had reached the point where I would usually tell very few (often no-one besides my own household) people when I was in that situation of knowing something is wrong, but not knowing what exactly is wrong. I wait till I feel in control emotionally of the situation and after I have a diagnosis and know exactly what I’m dealing with, before I tell others (IF I tell others), so their reactions can’t upset me and my recovery.

In the case of fibromyalgia, it took months to get my diagnosis and by then, I was on my way to dealing with it fairly well with my “combat mode” without many others knowing.

Then it became a question of when to tell anyone (besides some family and one close friend I had confided in)…I mean, when does that come up? Do I just come out with it in the middle of some social function? That felt awkward to me plus I didn’t really feel like talking about it at a social function…I was having a good time and enjoying a break from it.  I was glad people didn’t know. I wasn’t ashamed or embarrassed. It’s just that I found in the past that if others knew about a health condition, they would ask how I was (well-meaning, of course), which would make me feel like I was a sick person, when maybe I was having a day when I felt great and had managed to forget about it!

It kind of keeps your mind-set in sick mode because everyone keeps putting that on you, instead of the healthy mode mind-set that I was striving for. I think of myself as healthy, even more important I don’t think of myself as sick!  Besides, when others saw me as healthy and “normal”, it made me feel that way. I draw support from others more in this indirect way; they may not know it but they give me a nice break from my fibromyalgia life in that I get to be just healthy and “normal” for that time.

Yes, I just didn’t feel the need to tell people and deal with THEM dealing with MY fibromyalgia.

I have refused to be defined by this fibromyalgia thing…by myself or anyone else.

FIBROMYALGIA DOESN’T DEFINE ME. PERIOD.

Again, this secretiveness is my own personal preference, but what I know is real is that it has helped me immensely to KEEP THE CONTROL (over my mind-set) in my court, which, for me, has been crucial to dealing with fibromyalgia. I find that I generally draw my strength from within and it is easier to draw on that strength and keep focused on combating fibromyalgia without the distractions that others bring.

You may want more direct support from others and that is great too. You should definitely do whatever works for you and gives you strength and find your own ways of “minimizing it”.