Ten Things I’m Glad I DIDN’T Know About Fibromyalgia When I Was First Diagnosed…Fibromyalgia and Hope

I keep seeing these posts…they go something like, “Ten Things I Wish I Knew About Fibromyalgia When I Was First Diagnosed”.

I can’t deny…I know these posts have their merits…they are invaluable in fact…I mean, my entire blog to date is pretty much one big “things I wish I knew about fibromyalgia when I was first diagnosed”. Like others, I’m trying to pass on all this knowledge I’ve learned and (hopefully) wisdom I’ve gained, to others with fibromyalgia so that they may improve as I have, possibly even faster!

In spite of all this, I have to say I’m kind of glad I DIDN’T know many things about fibromyalgia. 

So let me explain.

First of all…WHY didn’t I know many things about fibromyalgia? Well, initially it was because of circumstances; I was waiting for a diagnosis, already starting to battle alarming symptoms of whatever new “condition” I was living with, to be able to keep functioning in my very demanding life, guessing (as doctors did) that it was likely MS. I’d barely heard of fibromyalgia, much less anything about it.

Then it became more by design as, by the time I finally got my fibromyalgia diagnosis, the things I was already doing to battle my new “condition”…were working. I had resurrected my “combat mode”, devised years earlier to battle endometriosis, whereby “I would try doing anything I could do to feel as healthy as possible in every other way”. And it was working! And I found I needed to stay very mentally focused to remain disciplined enough to continue to do these things that were helping me, amid the onslaught of frightening fibromyalgia symptoms and devastating chronic fatigue.

So…I got my diagnosis…my pamphlet about fibromyalgia from that doctor…and I went home. I think I thought I would ask for help when I needed some, but that time never came. I kept finding my own strategies and they kept working well enough to keep functioning and keep living my life.

And I worked hard to keep my mental focus on the things that I was doing that I could tell were helping me. Outside of an inspiring book about fibromyalgia that I read early on, I kind of kept blinders on to most things fibromyalgia. I didn’t want to dwell on it, I didn’t want to be “sick”, I wanted to “minimize it”, I kept the focus on the healthy things I now needed to do (“combat mode”) and the rest of my life…raising my young family, working on our business, whatever else was going on, “deliberate denial” is how I thought of it…my focus was on almost anything BUT fibromyalgia.

So I didn’t know many things about fibromyalgia when I was first diagnosed…AND I’M GLAD.

I’m glad I didn’t know I was supposed to “take all these medications” that I’ve gradually become remotely aware of and I now see people tweeting about. I might never have tried to battle fibromyalgia without using medications…and found out that I could…just fine.

I’m glad I didn’t know I “wouldn’t be able to exercise” as many say, especially not any high impact strenuous exercise or resistance training. I might never have climbed on my treadmill that first time, when I felt totally crappy…lethargic, almost immovable really, kind of numb in some areas, my head didn’t feel right, almost dizzy…and found that it helped! High impact strenuous exercise helped immediately that day and in the fifteen years since then, it, along with resistance training, has continued to be a key tool in my fight against fibromyalgia, often helping immediately, sometimes just keeping my general fitness and mood in functional mode.

I’m glad I didn’t know I “wouldn’t be able to get restorative sleep“. I may never have tried to apply all the knowledge about getting good sleep that I had gleaned over the years through research in my efforts to help my son with a sleep issue, to myself…and found that this learned sleep knowledge would help me to get fairly good sleep too.

I’m glad I didn’t know that my “diet likely wouldn’t make any difference” with my fibromyalgia as some declare. I may never have made such a persistent effort to continue to eat so healthy…and found that eating healthy does increase my overall sense of well-being to the point that it definitely seems to increase the quality of my life with fibromyalgia.

I’m glad I didn’t know I “would have to pace myself right out of a life”. I might not have pushed so hard to continue with my life and (yes, with many trial and error caused flares, for sure!) learned where the delicate balance between pacing and pushing is for myself so that I could still push to a degree to function and keep moving forward in my life.

I’m glad I didn’t know I would “have to stay in bed to recover from flares“. I may never have determinedly persisted at going on with regular life and therefore learned how crucial it was to keep exercising…to keep sleeping a regular amount (with a little extra here and there)…to keep on the move and help keep my positive gaze outward on living my life…and found that in doing all these it helped me to get through flares in a way that works well for me and helps in my long unwavering battle with fibromyalgia.

I’m glad I didn’t know that “thinking positively wouldn’t help my fibromyalgia”.  I may not have made such an effort to devise all these ways to change my thinking to be positive…and found that being positive (and reducing depression) absolutely DOES help my fibromyalgia because it helps me to reduce stress which I’ve slowly discovered is THE pivotol factor that so much of my fibromyalgia hinges on.

And I’m SO (beyond anything else!) glad I didn’t know these “fibromyalgia stages” that I would go through whereby “my life would gradually deteriorate to almost nothing”. Because…what would be the point of trying all these things I’ve tried…if there’s no hope?

What would be the point?

IF THERE’S NO HOPE.

I may never have tried any(!) of these things that have absolutely ended up being the sole reasons I have been able to keep functioning in my busy demanding life for over fifteen years with fibromyalgia now. And I’m not only functioning…I’m gradually improving…slowly, steadily, but unmistakably…improving!

In fact, when I learned that fibromyalgia was NOT degenerative and that I COULD actually improve (from that inspiring book so long ago), that was THE single most inspiring and game changing moment of my entire fifteen years with fibromyalgia. (It’s the one thing I’m glad I DID know!)

So I’m glad I didn’t know many of these things about fibromyalgia.

I’ve charted my own path. It’s been one with blinders on, to a certain degree, really to all the negative…I’ve stayed open to the positive and the inspiring stories…which leads me to my last thing I’m glad I didn’t know about fibromyalgia.

I’m glad I didn’t know (and I still don’t know!) that I “couldn’t recover or be cured”. Now, I’m not expecting it…I’m just trying to live my best life.

But I think there’s something to be said for having an optimistic ignorance of our SUPPOSED fibromyalgia fate…in other words…hope.

Yes…hope.

It leads me to try things that I may not have otherwise…and what I know is real…so far, it’s working out just fine.

 

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