Fighting the Fibromyalgia Flare Up…Surprisingly, Same Old Same Old…

Most of the time, I control it. Except for after a crash…a “flare up”.

I’ve taken on too much, pushed it too far, maybe something or someone has tipped me over the edge of my stress limit.

Symptoms feel out of control; serious symptoms, downright seriously scary symptoms at times; ghastly “walking corpse” feeling, extra crushing chronic fatigue, everything’s misfiring, it’s gone awry, it feels dark; any or all of these…overdone it.

I’m scared, truly scared, shaken…surely this can’t be my fibromyalgia, when it’s THIS bad…THESE DEEP CUTTING THROUGH YOUR CORE KIND OF SYMPTOMS…what if it’s a brain tumour, a stroke, an aneurysm…cancer? Should I see my doctor? And then, what if I do and it is “just” fibro? I’ve started a round of tests and even more stress (which, if it’s fibromyalgia, will make the symptoms worse!) for nothing.

And if it is indeed fibromyalgia…have I overdone it…lost control…pushed too far…can I “get back”?

This is my fibromyalgia…at it’s worst…the “flare up” that everyone dreads…a really bad flare up.

So what do I do about it? Well, surprisingly maybe, not as much as you’d think.

So let me explain.

Yes, after over fifteen years of living with fibromyalgia and no matter how many times a “bad” flare up happens to me, I get jarringly worried at first…upset and unnerved as seriously scary symptoms set in (I’m not even sure if they ARE fibromyalgia so now I have to go THAT route of worrying if something else is wrong with me!)…worried I have pushed too far (and/or allowed others to push me too far)…not sure if I can “get back”.

It can be absolutely grueling…for weeks…even months…scary as hell…I pull out all stops…including every and all the mindset tricks I have built up in my repertoire by now to reduce the bigtime stress/worry that accompanies the flare up of symptoms (AND likely caused the flare and now threatens to make it even worse)…fake it ’til you make it (whereby I fake that I’m well to MYSELF to reduce my stress to take that out of the equation and therefore help reduce the symptoms) is a crucial one.

So I guess it’s strange then, that when people ask me how I get through flare ups, I’m always puzzled as to what to say, because, well, I get through them the same as everything else.

It’s just A LOT HARDER…A WHOLE LOT HARDER.

Okay, not exactly the same. First and foremost, I get more cautious…I try to calm down if the symptoms are alarming…and then I pay close attention and proceed cautiously.  I don’t want to miss some other serious ailment and fail to see my doctor if I need to. I look for the CAUSE, which, as I explained in my last post, if the symptoms are indeed caused by my fibromyalgia, the cause of the flare up is pretty much always increased stress or maybe an extended period of poor sleep (which I find is actually an increased stress too).

So I definitely take it a bit easier overall (and respect the flare) while I STEP UP MY FOCUS ON DOING THE NECESSARY THINGS TO GET BACK ON TRACK. I start with alleviating stress of any kind…I immediately work hard on losing the additional stress that I believe caused the flare…my health is more important than ANYTHING!..and the jarring flare symptoms always serve to give me an immediate and serious wake-up call, making it fairly easy to change my mind-set fast to lose whatever stress I was letting weigh me down to such an overloading extent. And I usually work on getting better sleep (some extra sleep here and there always helps everything!), like naps when I can fit them in and maybe I miss an early morning workout here or there to sleep in a little later.

But here’s the part that I was getting at earlier when I said that I didn’t do as much as you’d think and that I get through them the SAME as everything else.

So while I take it a bit easier in some ways here and there, at the same time, I just DOUBLE DOWN and BATTLE BACK HARDER THAN EVER…but…in the right ways. I keep living my life as usual, struggling to do all my same routines and commitments the best I can, while relentlessly doing the things that I know always help to combat my fibromyalgia…I keep moving through life to help to “minimize it”…I reduce stress by changing my thinking to help me to stay positive and “fake it ‘til I make it”…I work on getting good sleep…I continue to exercise and to eat healthy.

It’s the same formula or mix of things…it always applies…it’s always the path to wellness.

lt’s just so much HARDER to do it during a flare…but so much MORE IMPORTANT to do it!

And of course, it’s definitely a delicate balancing act, far more than the usual balancing act we perpetually live in with fibromyalgia…trying to keep up my normal pace of life in general, while, at the same time, listening to my body and cutting myself some slack here and there. How much to push through…because everything(!) takes extreme pushing to get through during a flare up (hell, it takes a whole lot of pushing to get through regular fibromyalgia life!) …and how much to take it easier…because, well, I’m already in a flare, “on the edge”…what if I go over the edge? What then?

I honestly don’t know, because so far, in over fifteen years, it hasn’t happened…I’ve always been able to “get back”.

And although it’s not been easy…AT ALL…I persist…throughout flares.

I’ve dragged myself through pretty much everything I normally do with fairly bad vertigo for weeks on end. And I can’t believe I did this(!), but I’ve crawled around my house doing chores when pain kept my back so hunched over that I couldn’t stand straight up. I keep pushing and dragging myself through workouts that would usually be much easier, four to five early mornings a week …in fact, I rarely ever miss a workout because I’m in pain and not feeling well from fibromyalgia, flare or no flare…once, during a severe urinary tract infection, (another thing I can’t believe I did!…and wouldn’t recommend! ) I even jumped off my treadmill to run to the washroom about every five minutes of a forty-five minute workout,  rather than miss the workout. I keep doing most everything the same. I’ve even continued with all the optional things, like my regular volunteer days at my three kids’ schools, helping on their field trips, and taking them (and their classmates and teammates!) to and attending all their activities, when they were growing up…all throughout flares.

Sure, I end up doing more than my usual impromptu naps (that’s when my family finds me lying around here and there, exhausted on the spot and trying to catch a few minutes to recharge‎, but then of course, I fall asleep) but then, after a bit, I push myself to get up and keep going on with my life. And, although I don’t take any ongoing medications for my fibromyalgia, these are the times when maybe I’ll take the odd ibuprofen or acetaminophen to help break a vicious cycle before it really gets hold of me.

But generally, I battle on, pretty much life as usual by all appearances (as in, it appears usual to an outsider…but it’s incredibly exceedingly rough!).

And the reason I do this and inflict this on myself by not changing much when I’ve crashed…when I’m in a flare up? Well, it’s another one of those things whereby I started for one reason…and I continue for another.

I started because I didn’t feel I had a choice. Fifteen years ago, when I first had fibromyalgia, I was raising a young family with my husband commuting out of town from early in the morning until after their bedtimes five days a week and I had no family or friends close enough or available to help me. So, flare or no flare, fibromyalgia or no fibromyalgia, I was always going to keep doing all the same things, continuing to raise my kids with all their normal routines, at whatever cost to my health. (I always say my health is more important than anything else…well, except for my kids.) That was my decision…I just kept plodding through.

So right or wrong, I persisted through. Granted maybe I didn’t need to keep up everything I did, but I wanted to because, when the flare was done, I didn’t want to be even further behind on my life. I couldn’t even keep up on everything I wanted and needed to get done while living with regular fibromyalgia.

And the reason I continue to do flare ups in this way? My kids are grown now. I could certainly take it much easier than I do, to get through flare ups now, if I wanted to. But I don’t want to.

Because now, in retrospect, when I look back over my fifteen years of experience with fibromyalgia, it seems to me that it was the best thing for my fibromyalgia that I felt I was forced to keep trying to live my life as close to usual as I could manage, throughout flares, even though it was absolutely grueling to get through each time.

If I had crawled in bed and stayed for weeks, like I for sure felt like doing, given I know now that when I sleep too much it actually makes my fibromyalgia aches and pains set in worse, it seems that would have just COMPOUNDED THE PROBLEM. If I had stopped working out, like I for sure felt like doing, given I know now that exercise is a crucial element for me in battling my fibromyalgia, that would have also just COMPOUNDED THE PROBLEM (in fact, I need my workouts to function to be able to get through the flare better and faster). If I would have stopped keeping on the move and keeping my gaze outward on my busy life, like I for sure felt like doing, I would have ended up feeling helpless and “down” and not positive at all and that would have just COMPOUNDED THE PROBLEM.

I would have stopped doing all the things that help me battle my fibromyalgia (at a time when I, in fact, need to do them more than ever!)…so much so that I wonder how (and if!) I could even pull out of a flare at all.

Certainly, it would take me much longer, and then I would be set back so much that I would be practically starting over in getting back into the routines that, as I don’t take any ongoing medications, I totally rely on to battle my fibromyalgia. As odd as this may sound, it is definitely easier to keep up my workouts through a flare than to stop them and lose my fitness level and then try to start up again.

And certainly, my flare ups would have been more severe, if I suddenly stopped doing the things that are my biggest (and only) line of defense against my fibromyalgia.

Yes, it was (and is) extremely tough to do. If I felt I could have possibly lied down somewhere and rested…for days…and weeks…sometimes months…I would have, in a heartbeat…BUT I’m so so glad I couldn’t, because by now, I know this is the way I will keep tackling flares.

It’s like when someone starts a new workout regimen and they’re stiff and sore all over from using the muscles in a new way, but if they don’t let up, and they keep it up regularly, they will get to the end result of being in shape and not being sore faster than if they had let up and then started over to try again. For me, it’s the same principle with flare ups…push right through them and keep up my usual routines and get to the end result of getting through them faster.

And when I tackle flares in this way, I am continuing ‎to work on my unwavering and determined overall battle with fibromyalgia that is leading me to gradually, but unmistakably, STEADILY IMPROVE over the years. And when each flare is over (because I have gradually built myself back up again), I have not lost ground with everything that I use to battle fibromyalgia on an ongoing basis.

So as my life changes and perhaps my life responsibilities and obligations lessen, and maybe I have more opportunity to do flare ups differently, I don’t plan on changing much. I may be able to slack off a little more, but I know for sure that I CAN, and I SHOULD, keep pushing and plodding through and keep living my life. I’ve even had the thought that I will still make regular commitments for this reason, so that I have to get out of bed and go places and do things and keep up routines.

As I’ve said before, “Right from the start I decided I’d rather do things with pain and exhaustion than not do them at all.” This goes for life during flare ups too. I was always hugely determined to not let fibromyalgia change my life ‎or my kids’ lives, no matter how difficult it was for me to do this…and I’ve found out, it turns out, the bonus is, that this seems good for my fibromyalgia too!

‎Yes, there was a time when I never would have thought that; I would have given my right arm for a month to just lie down somewhere and sleep, but after seeing how this works now for over fifteen years, I’m not so sure that would be wise anymore.

And in fact, I know this is going to sound hard to believe but, I’ve ended up not even spending one day in bed in the fifteen years I’ve had fibromyalgia…not one.

But hey, would I tell others to do it the same way as I have? I really don’t know, I’ve only done flares in this one way. I have nothing to compare to. But I can say that it feels like I am on the right track overall… I’m probably much better now at knowing where the fine line is between pushing and not pushing so as not to get to that flare up point in many cases in the first place…so my flares are fewer and farther between and much less severe. It was so long ago, maybe two or three years ago, that I can’t remember when the last real “crash” severe flare that I had was. Any since then any have been more of a nuisance and annoyance than anything else and I continue to get through them easier and faster.

Yes, this is all so personal, what is important to us, what we are willing to try, and to sacrifice, and to risk, to live our life in the way we want. There is much unknown about fibromyalgia, so our individual decisions as to how to combat it always carry risks, most of which are also unknown to us.

What I know is real is that I can look back and honestly say that, in the fifteen years I’ve had fibromyalgia, I’ve still lived my life as I wanted to, not too different than I would have if I didn’t have fibromyalgia.

It has not been easy, it has been excruciatingly difficult.

But it has been worth it.