With respect to a lot of things in life, we can get stuck in a mindset… I have fibromyalgia, I discovered a long time ago that with that, comes fibro fog. I’ve been experiencing it firsthand for over two decades now. So I’ve simply come to think that fibro fog is a permanent part of my life…that has become my mindset.

BUT…I’ve slowly seen evidence that I CAN improve it…that being, I already HAVE. Very gradually I’ve noticed my fibro fog IS improving over the years.

And I was happy with that for a time. I was surprised to notice it was happening…and happy…no, more like thrilled. But still, I stayed in that mindset…sure it’s improving, but I’ll still have some sort of fibro fog for as long as I have fibromyalgia.

And even though I’ve wondered if I’m actually very (very!) gradually recovering from fibromyalgia, my mindset about my fibro fog had not changed…had not changed that is until recently, when I saw this new book about “BUILDING A BETTER BRAIN” being discussed on TV… and it started me thinking…WHY do I have to just resign myself to having fibro fog?

As in, there must be something I can do to sharpen up my brain again…and I guess some would call it a “light bulb moment” when I suddenly realized…WHY can’t I get rid of my fibro fog too!? Who says I can’t!?

My sharp memory…I want it back!

So let me explain.

Now yes, I’ve been happy to have my fibro fog improve…but maybe, just maybe, I can get it ALL back. Maybe, I pondered, maybe I can get my very sharp memory back.

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As in, I’m going to get researching and find out how! My fibro fog has been improving along with all my other fibromyalgia symptoms as I gradually work on my overall fibromyalgia. But now I’m going to specifically target my brain…let’s see if I can get my previously sharp memory back!

So I bought the book almost immediately, “KEEP SHARP:  Build a Better Brain at Any Age” by Sanjay Gupta, MD, and I started reading.

Gupta, a neurosurgeon for the past twenty-something years (and yes, CNN’s chief medical correspondent for some time now too) caught my interest immediately. I knew I’d found a like-minded individual in his self-describing words “believing you can always be better tomorrow” and I couldn’t wait to see what he had in store for me to learn how to build a better brain (tomorrow).

And he did not disappoint.

He immediately gave a good overview of the book in his introduction which only piqued my interest all the more. He would be debunking all those myths we’ve all heard (Yes! Please finally tell me if any of those supplements marketed for boosting brain health work at all!?) and replacing them with what we COULD be doing THIS MINUTE to think and be sharper. TOMORROW. Yes!!

He promised a comprehensive review of the science and latest cutting edge research, the foundation for us to understand his “five pillars of brain health”, followed by practical lessons that ANYONE can carry out starting IMMEDIATELY, leading up to his “12 weeks to Sharper” plan…”a personalized road map for arriving at a sharper brain for life”.

He assured “simple interventions all of us can make right away that can have a significant impact on our cognitive function and long-term brain health”.

And having lived with fibro fog for over twenty years now…(and I know you can identify) well, this is music to my ears! (“Simple” sounds very good! We have enough on our plates already just keeping afloat with fibromyalgia…I don’t need to throw complicated stuff in the mix.)

Gupta goes on to explain that it’s not that hard to do…“periodic little tweaks and adjustments instead of wholesale changes in your life” will provide “general maintenance and upkeep” of our brains…”even small, incremental tweaks can have huge payoffs” he insists. (I am so here for this!)

And the specific benefits we will attain by working on building a better brain? Well, I will take ANY at this point, but these really do sound quite hopeful in terms of help with my fibromyalgia on so many fronts, far more than just my fibro fog.

Gupta spells out the benefits. “A resilient brain can withstand ongoing trauma, think differently, stave off brain-related illnesses including depression, and retain cognitive memory for peak performance.” “You will make better decisions, have improved resilience and a more optimistic attitude, and the physical part of your body will improve too.”

“Studies show that your pain tolerance will increase, your need for medications will decrease, and your ability to heal will be accelerated.”

He will provide “strategies to also be more productive, feel less overwhelmed, and generally navigate through life with ease and joy.”

So, withstand ongoing trauma, stave off depression, retain cognitive memory, improved resilience, more optimistic attitude, improved physically, increased pain tolerance, decreased need for medications, accelerated ability to heal, more productive, feel less overwhelmed, navigate life with ease and joy!?

He had me at “retain cognitive memory”!

What’s more, Gupta explains, “There are things we can do to maintain, enhance, and sharpen our abilities to remember, retain, and retrieve that information as long as we live.”

And he insists that our brains are the one organ that can get stronger as we age, that ANYONE can build a better brain at ANY age, that he will show us how to make our brain as sharp as it can be at any age, that our brains are more resilient and RECOVERABLE than we think.

Now that is truly amazing to know…that we can make these improvements in our brain at any age!

And even more amazing, Gupta writes, we can do this by focusing “on the things you get to choose, big and small, day in and day out.”

Yes, “Our everyday experiences, including what we eat, how much we exercise, with whom we socialize, what challenges we face, how well we sleep, and what we do to reduce stress and learn, factor much more into our brain health and overall wellness than we can imagine,” he states. “What the science is increasingly showing is that we can have a huge impact in our brain’s fate with simple lifestyle choices.” And not only do our everyday choices and behaviour play a key role in our brain health, he explains, they can result in very rapid improvements.

Very rapid improvements!

So yes, after reading Gupta’s overview of the content of his book I knew I was on the right track to get some help with my fibro fog and quite likely much, much more. I mean, he’s speaking of the things I’ve been using as tools to battle my fibromyalgia for over nineteen years now since my diagnosis…and I already have the proof of what he’s saying…my fibro fog HAS undoubtedly and noticeably been improving! So I was definitely keen to learn even more that I can do.

Now I have to admit, wading through his initial introduction to our “inner black box”, as he calls our brain, was a little challenging at times to absorb it all and take it all in but I have to say, he succeeded in making a very complex and comprehensive topic about as easy to understand and relatable for a non-neurosurgeon as can be. I mean, (even with my fibro fog) I was able to fairly easily grasp the content he was conveying, albeit sometimes giving some concepts a second read through to thoroughly understand.

And it WAS interesting! Especially from the perspective of someone with fibromyalgia which has long been suspected to be a “brain thing” (although yes, I’ve heard of many credible theories and studies pointing in different directions over the years) and at the very least, my fibro fog IS most definitely a “brain thing”!

So I was keenly interested to hear Gupta discuss “the ability of the brain to heal and rehabilitate itself, even after significant trauma”. (Makes me wonder…EVEN after fibromyalgia? EVEN fibro fog!?)

“This process of RE-ESTABLISHING NETWORKS AND CONNECTIONS in areas of the brain damaged by the injury is what’s called NEUROPLASTICITY”, he writes, peaking my interest even more of the possibilities of REWIRING OUR BRAINS once damaged.  He states that it is now known that “the brain is a lot less static than we thought in the past. It’s alive, growing, learning, and changing—all throughout our lives. This dynamism offers hope for everyone looking to keep their mental faculties intact.” (…and perhaps looking to regain their previously sharp mind from fibro fog…maybe? Cross my fingers.)

And then as far as our present day-to-day living, I was keenly interested to read Gupta’s explanation of what’s normal and what’s not for memory lapses in terms of his discussion of the terms of “blocking”, “scrambling”, “fading away”, “struggling for retrieval”, and “muddled multitasking”. I think those of us with fibromyalgia will see ourselves more than once here (fibro fog!); I know I did.

In addition, as someone with over twenty years experience dealing with fibro fog, I can say that I was pleased to also see myself more than once in some of Gupta’s explanations of things that impact our memories for the better. One of the great takeaways of the book for me was I learned I have been on the right track already with some of the little tricks and tactics I’ve devised over the years to help myself remember things.

When he spoke about the importance of paying attention and “original awareness” (i.e. noticing) to memory, I thought of how I’d realized some time ago, as I wrote in an earlier post, that “I have to keep my guard up, to try to keep focused. I’ve learned to make a concerted effort to try to be present in what I am doing…I focus on the details, and I try to keep my mind in the moment and on what I’m doing…so I don’t get distracted and/or so I will remember something.”

And when he emphasized “active observation versus just seeing”, it immediately made me think of my fibro fog combatting practice of saying things out loud as I am doing things, to help me remember. For example, if I am doing some chores around the house and I want to remember something, maybe counting something or remembering some items, I count out loud or say the items out loud. I’ve found this helps me to remember…because I remember saying it. I find it works better than just thinking it, which easily gets lost in my fibro fog thoughts. (Now of course I generally only do this around my home or somewhere where I’m out of earshot from others…this may not work at your job, or in a store…you may want to keep this tip for someplace that talking to yourself out loud goes over okay!)

So yes, it was great to see my trial and error learned strategies reinforced by a neurologist and even greater to read of all the other memory training ideas he presents that I will now be practicing in my repertoire because as Gupta emphasizes, the concept of “use it or lose it” very much applies to our memories.

I have to say I found this all very exciting to hear. The fact that WE can do something…lots of things actually(!)…daily…to sharpen our memories, to rewire our brains…and even generate new brain cells.

Which brings me back to, what exactly do we have to do to rewire our brains? Well of course Gupta, again, does not disappoint in laying it all out for us. He goes on to detail what he calls the “five pillars of brain health” which he assures encompass all the practical strategies we need to protect and heighten our brain function.

And he also assures that he has strategies for everyone, easily incorporated into our lives, well within our reach to do, from a tailored twelve-week program for those who need specific directions, to extra tips for those seeking to increase productivity and make the most of their time (Oh gosh, how I could use that extra hour in a day he says is attainable!).

He will help us build better habits to shape a better life through a sharper brain.

So as I waded into Gupta’s “five pillars of brain health” I was delighted to find his recommendations, his “better habits”, very doable…and you know how I know that? I’ve been doing many of them for decades already!

In fact, I can even say that it’s been my experience that his guidelines, his program, is A GOOD ROUTINE TO FOLLOW FOR FIBROMYALGIA IN GENERAL. Generally, much of it is what I’ve already been doing for over nineteen years now since my fibromyalgia diagnosis and have found, it helps. It helps a lot.

And now, with Gupta’s book, I have the explanations, firsthand from a neurologist, of why it all helps plus so many more ideas to try, to continue to improve.

Yes, I found so many explanations throughout “KEEP SHARP” that resonated with what my experience has already shown me.

As in, for some time now, I’ve been wondering what it is about Friday, other than the obvious…it’s Friday(!)…that my writing of my blog posts just flows so much easier than other days…and now I found out. I found out what it is that I’ve been doing that gives me such an immediate (within one hour he says) boost in productivity, alertness, and overall an increased mental sharpness that sometimes feels like suddenly a brainstorm session just finds me!

I move. (And I move a lot on Friday mornings in particular.)

Yes, I found out that I have already been doing “the single most important thing one can do to enhance their brain’s function and resiliency to disease” and “there is a nearly immediate measurable cause and effect going on”…nearly immediate…that explains it. It can be a “first aid kit” for damaged brain cells, speeding up recovery after injury, stroke, or a significant emotional stress.

And personally I don’t find any of this hard to believe…I think I’ve already been witnessing this throughout over twenty years of fibromyalgia (nineteen since diagnosed), in the short as well as the long term.

Because, throughout it all, I’ve kept (physically) moving.

He sites many benefits to our brains, that, as I said, I already know to be super helpful to my fibromyalgia in general as well…things like supporting emotional stability, staving off depression (and dementia…good!…I know I sometimes secretly fear that is where my fibro fog is leading to), as well as having more mental energy in general, likely feeling more optimistic and better able to tackle the challenges of the day (yes please to that too!).

And specifically to help my fibro fog? Well, that’s all good news too…a sharper mind…thinking better, more quickly, clearly and focused…better processing skills…consolidating new information…more likely to have truly novel thoughts…better memory and reasoning abilities.

He gives guidelines on a whole array of movement we can do, and how much, to maximize the benefit to your brain, as well as highlighting the benefit of naturally fitting these things throughout the day, something I find I am already conscious of to help keep my fibromyalgia aches and pains at bay (because yes, experience has shown me that movement helps them too).

And if this isn’t enough (it is!), Gupta also explains movement’s role in stress reduction. And with stress being one of my two major triggers for fibromyalgia flares, I was keenly interested to hear him explain how we can mitigate our body’s reaction to stress and its resulting flood of the stress-related hormone cortisol to help reduce the resultant negative affects on memory and learning, and even long-lasting brain changes.

So Gupta’s explanation of how physical movement helps the body and brain to heal, it having the “strongest evidence to date of positive brain changes”, offering “the greatest return on investment in yourself”, rang more than a few bells for me and now that I fully understand exactly what it is I’ve been doing that’s been stimulating my mind and “turning on my smart genes” as he says, to get these nearly immediate results, I’ll be working his very doable suggestions into my every day life and doing them all the more!

And these suggestions weren’t the end of it; no, that’s just the start. As I got deeper into “KEEP SHARP”, I found that Gupta goes on to show us “how to discover your brain’s full capacity through strategies that heighten attention, focus, and concentration” by giving the “right way” to use our brains in challenging ways to help us “tap the “plastic” power of the brain—its capacity to rewire itself and strengthen its networks”.

He explains this entails helping our brain to change how it operates to find alternative routes if one road becomes impassable and he also details many very doable things any of us, at any age, can choose from to do, over time, to do this.

And like a lot of things in life, to gain the rewards, we simply have to DO these things he lays out for us…as he says, “Experience drives plasticity in the brain”.

As he explains, all this helps to “ultimately build new networks and strengthen existing ones” “to help your brain better manage any potential failures or declines it faces.” And personally, already dealing with fibro fog all these years, I am here for this!

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I actually feel this book could almost be a manual on how to live with (and thrive with) fibromyalgia. (Fibromyalgia HAS long been suspected to be a “brain thing”, so there’s that.)  Because the next topic Gupta covers is the vast benefit to our brains of relaxing (reducing stress to be exact), and getting restorative sleep, which incidentally are the two key things I know from experience I need to do to manage my fibromyalgia well.

And in relating these benefits to our brains, he of course explains the impacts on our brains of NOT managing stress well and of NOT getting good sleep. And I have to say, none of this was surprising to me. Having fibromyalgia, I’ve lived out these things on a daily basis for over two decades now.

I mean if I don’t get decent sleep on any given night or especially for any extended period of multiple nights, the difference in my ability to be insightful, ­­­­remember things,­­­­ learn new knowledge, process and interpret information, be alert and focus, and just generally function normal mentally, AND cope well with stress, during the day is just a stark contrast to a day when I have gotten a decent amount of restorative sleep. (Not to mention all the various physical symptoms that will kick in too.) The difference is like night and day.

“Sleep is the single most effective thing we can do to reset our brains and bodies”, Gupta says which relates directly to how I described my experience with fibromyalgia in a previous post…I have to “manually reset” my functionality daily with a decent night’s sleep the night before, or I’m toast.

Yes, as Gupta states, “Studies have convincingly proven that sleep habits ultimately rule everything about you”, and having fibromyalgia, don’t I know it! I live it extensively, in terms of my functionality, mentally and physically, EVERY day.

And he goes on to explain the tremendous amount of vital processes, regeneration, rejuvenating and decluttering happening in our brain as we sleep…a replenishing that affects every system in our bodies, from our brain to our heart, our immune system and our metabolism.

Ah, sleep, that thing that is sometimes so elusive for those of us with fibromyalgia, it’s no wonder we have fibro fog when you consider what Gupta details CAN’T happen in our brains when we get poor sleep…things like memory organization, ability to process and interpret information.  Chronic sleep deprivation, he says, “can lead to a staggering amount of memory loss that can even appear like the onset of dementia.” Yes, we know it well.

And it’s no wonder we have inflammation! Gupta also says a “strong body of evidence already shows that lack of sleep raises levels of inflammation.” And listen to this!  A “single night of inadequate sleep is enough to activate inflammatory processes in the body, especially in women for reasons we don’t know yet.”

Tell me about it!! We could be case studies for this!!

But thank goodness Gupta explains “sleep is medicine”. As he says, “Sleeping well is one of the easiest and most effective ways to improve all of your brain functions, as well as your ability to learn and remember new knowledge (it improves every system in the body).” Yes, he states these symptoms of cognitive decline we experience with sleep deprivation are highly reversible and he will help ensure we achieve restorative sleep on a nightly basis.  He then proceeds to lay out his “TOP TEN SECRETS TO SLUMBER”, which incidentally and no surprise to me, echoed some of the tips I recently read in “THE SLEEP SOLUTION” written by a fellow neurologist and reviewed in my earlier post.

And I know Gupta is right about these symptoms being highly reversible because, as I’ve written about in an earlier post, I was able to finally “fix my sleep” some years ago, with amazing results. Fixing my sleep lead to very gradually leaving my chronic fatigue behind while also gradually improving a great deal of my fibromyalgia symptoms on a daily basis, including experiencing my most significant improvement in my fibro fog, this being the definite distinct improvement in my ability to tackle high level thinking tasks again!

Which brings me to the second part of Gupta’s “relax” advice…reducing stress.

Because, like poor sleep, if I allow myself to become overly stressed, I feel this so directly too. As Gupta states “stress is particularly subversive” for our brains and quite honestly the same could be said for how stress affects my fibromyalgia.

Gupta discusses how “chronic stress can impair your ability to learn and adapt to new situations” and for those of us with fibromyalgia this is certainly true, but it’s also so much more. I mean stress is basically the kryptonite to my (fibromyalgia) world. As I wrote about at length in a previous post, any and all fibromyalgia symptoms, fibro fog and physical, can be kick started with stress, at times leading to a flare that can last for days, weeks, even months or years, depending on the severity of the stress and the length of time I’ve endured it.

So I was super appreciative to find Gupta’s lengthy career’s worth of tips in the book, to take advantage of to help to relax and reduce stress, unwind, and “chill out” our brains, as he says. He outlines an entire range of stress-reducing activities and how to practice them.

And then what I found particularly interesting was that he outlined a whole series of other easy-to-do everyday R&R ideas that we can do to use our brains in an optimal way for our mental well-being…things that trigger hormones in our brain which can relieve stress, reduce tension and anxiety and depression, even reduce pain…things that “reset” our brains and build a more resilient and productive brain…things that help us focus and optimize the way we use our brain.

And things that don’t. Things that all of us do most every day that are unfortunately slowing our thinking. (This explains why, as I wrote about in my fibro fog post, I’ve found cutting out all distractions using ear plugs and even setting a timer helps me to cut through my fibro fog to focus to get a task done.) He goes on to detail what our brains like and what they dislike in terms of how they function, and then given these, some amazing tips on how to use our brains capabilities to achieve our maximum focus, or how to “get more done using less effort” as he says.

Having fibromyalgia, I’m here for it, in so many ways!

I was also here for it to find yet another tool in my fibromyalgia kit discussed at length by Gupta and including a whole slew of new tips for me. Now I’ve long been keenly interested in eating healthy but I never realized just how much it was likely helping me function better with fibromyalgia until I delved into a bit of research to write my earlier post about diet and fibromyalgia. And now, I guess I shouldn’t be surprised, while reading “KEEP SHARP”, I find out the same goes for my fibro fog. I mean, you probably can’t have a discussion about the optimal functioning of any parts of our bodies without what we put into our bodies, our diet, entering into it.

So when I hear Gupta throw out phrases such as “help preserve cognition”, “improve cognitive function”  and “lessening cognitive decline symptoms”…and then he says all we have to do is consume certain foods, while limiting certain other foods…well, I’m all ears. (This really does seem like a no-brainer to me, pun intended.)

And if you think Gupta’s going to prescribe some strict, distasteful, boring, rigid, hard-to-follow “diet” that challenges your willpower, well, think again. Not on his watch. From his analysis of decades of research, Gupta arrives at recommending more of a “way of eating”, a “dietary style” with a general framework that will help us fuel our bodies…and our brains…in a proactive way.

It is a way of eating that encompasses a combination of healthy foods with a dose of “everything in moderation” (my personal long time favourite diet rule) and he states that even “exceedingly small shifts can have a tremendously outsized effect”.

Then of course Gupta details what those shifts should entail, his guidelines…his thumbs up for what nourishes our brains…and his thumbs down for what doesn’t.

As for what doesn’t, you’ll find out what (worst) foods you can stop immediately to “stop the external attack on your brain”. Next the flipside of that, what (top) foods you can add in to kickstart a proactive approach to better brain health and improving cognitive function.

He discusses what the research shows about some of our beloved drinks, coffee, tea, and yes, alcohol, and their effects on our cognitive function, both short and long term.  (Not to mention he tells us, ideally, which wine to choose. Yes!)

Gupta goes on to weigh in on what the current science says on supplements versus food sources, including all those supplements we see marketed for boosting brain health and improving memory. He discusses the research on things like portion control, fasting, fiber intake, types of fiber and their roles, and organic food, and their affects on boosting memory and mood, some even helping to prevent depression, hypertension, and dementia.

He talks about a common spice that has shown study results of significant improvements in the memory and attention abilities while also boosting mood in people with mild memory problems.

As for myself I didn’t need anyone selling me on the benefits of eating healthy, but I can tell you, even after eating healthy for many decades already, I now have so many more tools in my kit to do it specifically to combat my fibro fog, as well as so much more knowledge of the incredible benefits it is to my brain health and cognitive function in general to keep me motivated to continue for life!

And while “KEEP SHARP” had some areas of discussion I had some familiarity with previously, it had other areas of discussion that were totally new to me. It was total news to me that some common everyday things we can do will improve our brain’s plasticity and my new knowledge from “KEEP SHARP” is giving me some extra prodding and motivation to step out of my comfort zone and do these things more.

Yes, when I see Gupta saying something can “help preserve our cognitive abilities” and “decrease our risk of cognitive decline”…help “reduce stress and boosts our immune system” and “help keep your mind sharp and your memories strong”… it can even “provide a buffer against the harmful effects of stress on the brain”….well, I have to admit that is excellent motivation!

Furthermore, I’m seeing many of these everyday things, these lifestyle choices, in a different light now. Their affect on our brain’s plasticity is remarkable. I’m thrilled to know that WE CAN MAKE CHOICES EACH AND EVERY DAY THAT WILL KEEP OUR BRAINS SHARPER FOR LIFE. And I was equally thrilled to see Gupta lay out precisely what these choices look like in our everyday life, how to incorporate all the information and strategies he gives us into, well, what we do everyday. Yes, it’s his “12 weeks to Sharper” plan that I mentioned earlier…”a personalized road map for arriving at a sharper brain for life” as he describes it.

And this is what I especially love about Gupta’s book, the actual hands-on he provides, the daily practice of what he preaches, spelled out clearly and precisely. Things that WE can do, on OUR OWN, no one and nothing else needed (my kind of thing!).

As he says, “Never forget that the brain is exceptionally plastic—it can rewire and reshape itself through your experiences and habits, and a lot of this remolding can be achieved in a mere twelve weeks. It’s like building any other muscle.”

He predicts that even within a couple of weeks of following his guidelines, one will “have fewer anxious thoughts, better sleep, and improved energy.” And he proceeds to show how to do this “one day, one change at a time”. (That’s good to hear; having fibromyalgia, that’s my pace, one day at a time.)

Now, if you’re rolling your eyes about now, thinking that having fibromyalgia, with all its constant unpredictable ups and downs, committing to any ongoing “program” is about the last thing you need, settle your eyes down because Gupta’s too smart to recommend something that isn’t flexible, doable, and able to be personalized for each person’s unique life. He stresses his program does NOT have to be followed precisely; that it is designed to be tailored and highly individualized, practical and easy to follow.

Personally, I already have my routines in place, routines born out of over two decades of lived experience with fibromyalgia, hard earned through trial and error, so I’m fitting my new tips from “KEEP SHARP” within my own existing framework, and with Gupta’s emphasis on practicality and flexibility, I don’t think he’d mind.

As I waded into his last section of “KEEP SHARP” I felt glad I was already fitting these new brain plasticity tips into my life, for his last section was about dementia. In a nutshell, in this section he tells us what to do and how to thrive if you or a loved one should be facing that diagnosis, and how to reduce your risk for dementia RIGHT NOW.

It contained very sobering facts but the bright side is there is much we can do about it with simple lifestyle decisions NOW, practices that are within all of our individual power to do, and that don’t require money or drugs we can’t get access to. He goes on to give strategies that target different areas in life that are modifiable, showing evidence of the ability of our everyday choices in delaying onset or reducing the severity of symptoms.

Gupta insists, “Dementia does not have to be a death sentence or feel like one for either the patient or the caregivers,” and offers, “My hope is to leave you hopeful.”

And then he says something about dementia that personally I’ve found to be maybe the most important thing I’ve found in living well with fibromyalgia too…“In all my years of doctoring and reporting, I’ve noted that the people who live better—and longer—are the ones who hold on to hope.”

Hope.

Yes, I knew I’d found a like-minded individual when I started the book. I’ve come to realize, as I said in an earlier post, “I know I’ll be alright if I have hope. Hope is my starting point.” It’s definitely long been a key ingredient for how I function in my fibromyalgia life and my life in general.

And it’s a common thread running throughout Gupta’s entire book too, intertwined with all the facts and knowledge and even based on them, his hope and optimism about all we can accomplish with our own brains.

“Indeed, every day of your life, you can make your brain better, faster, fitter, and, yes, sharper.”

And I absolutely believe him. After reading his book, I believe I’ve already witnessed it; reading “KEEP SHARP” is pulling all the pieces together for me now, I feel I see why I may have experienced the improvements I’ve already seen.

As I read through this book, it is filling in many of the pieces of my fibromyalgia journey and my gradual improvement over the years. When I look at my timeline, improvements over the years HAVE coincided with the increasing lifestyle changes I’ve done that I now notice are recommended by Gupta.

His book has given me a new perspective on (and motivation for) the many things I’ve already been doing to battle my fibromyalgia for over two decades now and what I now realize these things have been accomplishing all along in terms of my brain’s plasticity, and hence their likely role in my gradual improvement over the years. And even better, I now have some new tools to help continue my fight and specifically work on my fibro fog, confident in the knowledge that I am on the right track!

So rewiring IS possible, generating new brain cells IS possible, rebuilding what was lost IS possible…and I have all the tools I need. I. Me.

Previous sharp memory…here I come!

What I know is real is what an incredible wealth of knowledge and hands-on practical tips ”KEEP SHARP” would be for anyone, but especially for those of us with fibromyalgia.

I’ve just scratched the surface of all you can learn in this amazing book that would be invaluable for your fibromyalgia journey, first of all in the short term, with immediate improvements resulting from new things you can start doing right away…and as I highly suspect, in the long term, as I have experienced by already doing so many of these things and gradually improving and healing for over a couple of decades now.

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So I highly recommend “KEEP SHARP:  Build a Better Brain at Any Age” by Sanjay Gupta, MD because in the words of the author, “when you put your brain first, everything else health-wise falls into place. The brain is ground zero. Don’t forget that it is what makes you. Your heart ticks, yes, but it’s your brain that ultimately makes you tick and determines your quality of life.

“Quality of life”…sounds good to me. It IS what I’m aiming for.

I mean, what else is there?

“Whether you are dealing with a chronic disease or are an elite athlete, tomorrow can be better.” – Sanjay Gupta, MD

The last thing I ever would have thought, as I sat in a business class decades ago, listening to a prof explain an idea in psychology known as “Maslow’s Hierarchy of Needs”, is that decades later this theory would keep creeping back into my thoughts over and over again throughout my twenty years of having fibromyalgia.

When I learned about it that day in university, it was presented as a stages in life kind of thing, a gradual steady ascent (hopefully) up the “life pyramid”, to the better things in life…that is, unless something unfortunate happens and you get knocked down again to an earlier stage.

But over the years, it keeps occurring to me, when you have fibromyalgia, it’s a monthly, weekly, sometimes daily kind of thing, getting knocked down‎! Not a life stage.

I mean, I have been continually KNOCKED BACK DOWN to BASIC SURVIVAL MODE. Working on the most basic of needs.

                         MASLOW’S HIERARCHY OF NEEDS

The bottom. Starting the ascent all over again. Often.

Real often.

So let me explain.

As you can see in the diagram, in his “Hierarchy of Needs” pyramid, American psychologist Maslow, in his 1943 paper, used the terms “physiological”, “safety”, “social”, “esteem”, and “self-actualization” to describe the stages, he theorized, through which human needs and motivations generally move. According to his theory (in a nutshell, in my understanding), the needs of each stage must be met for an individual to be motivated to move up to the next stage, starting with fulfilling the most basic of needs to live, an individual’s eventual goal proposed to be finally arriving at the top stage in life of “self-actualization”.

And moving through the stages, as I understood it, would likely be a gradual, uphill journey, on the pyramid, that we all work on in our lives. We start out as young adults, working hard to get a start in life, securing our “physiological needs” of having food, water, sleep, a roof over our heads, then our “safety” needs of security and well-being. Having those needs secured (enough) we are freed up to move up to fulfill our “social” needs with family and friends, then on to our “esteem” needs, and hopefully even achieving our full potential of “self-actualization” and happiness.

Great plan.

I vaguely remember my prof speaking about circumstances in life derailing that plan sometimes, knocking you off your ascent, down a level or two on the pyramid, and having to slowly work on moving up again, but honestly at that young age, that went in one ear and right out the other for me.

Getting derailed simply wasn’t on my radar. (Who expects THAT will happen!?)

That is, until fibromyalgia. Yes, fibromyalgia ushered in the “era of derailment” for me.

That “hierarchy of needs” pyramid that I’d been steadily climbing for a couple decades, well, let’s just say I’ve been knocked down to the bottom of it (sometimes STUCK at the bottom of it!) and started climbing back up again more times in the last two decades since my fibromyalgia diagnosis than I care to remember (if I could remember…thanks fibro fog). Yes, that old pyramid, I’ve crawled up and down, and down and up, maybe sideways at times, pretty much every which way you can go, probably even near dropped right off it a few times.

And when you’re talking fibromyalgia and getting knocked back down again, of course you can’t leave out the biggie, flares, that are always good for knocking us down a level or two…or four.

For example, maybe I’ve been doing alright for awhile, my fibromyalgia’s somewhat manageable; I’ve made it to the level where I’m actually planning a few “social” things, maybe a holiday…I’m mid level on the pyramid. Or once in awhile I’ve had an exceptionally good run; I’ve made it all the way up to “esteem” and even working on a little “self-actualization” plans in my life…I’m at the top.

Briefly.

Then boom. A flare hits. It’s immediately…as in, do not pass go, do not even finish my bit of “self-actualization” efforts…back all the way down to…basic survival again. And forget being excited about plans, about working on my life, the lofty plans and ideals are gone; I’m suddenly just pushing through life again…struggling to do the day-to-day minimum.

Back to basics.

Or rather, the ‘physiological” on Maslow’s pyramid, the bottom level, the necessities of life. Yes, I’m SIMPLY WORKING ON SURVIVAL…my health…getting enough sleep despite the pain and whatever distressing and scary symptoms this flare dreams up…reducing everything I can in my life to limit stress on my system of any sort…working hard to maintain my fibromyalgia helping routines by pushing through to keep up my exercise and diet routines in the face of immobilizing chronic fatigue.

It’s back to one day at a time. Beginning the slow work of climbing the pyramid. Again.

And everything else has to be put on hold. Again.

The fun plans, the “self-actualization” dreams, they go first, easily, they’re not really necessary. Then a certain amount of the chores, anything that can wait, it’s out of there too, put aside to continue to pile up with the years of chores I’m already behind on by now. I’m just down to pushing and dragging myself through each day to get my responsibilities done; the bare minimum to get through each day, which, for me, raising three kids with fibromyalgia still meant a long day of responsibilities, but now an extra long grueling day put in to SOMEHOW manage to just get…the MINIMUM done.

And when I say “back to basic survival” again, having fibromyalgia, we repeatedly feel, yes, our VERY SURVIVAL.

We often don’t know what we’re dealing with; our symptoms can mimic other very serious health conditions; like cancer, I’ve been through that whole series of medical appointments, and tests (and stress!), waiting to find out if I am dealing with cancer, more than once, but alas, weeks or more likely months later, it turns out, thankfully, no, it’s “just” fibromyalgia symptoms.

Yes, that’s the way fibromyalgia goes…all the way from getting a bit of a life, back down to basics…survival…again. One day at a time.

And you’d think getting knocked down a few stages in life, it would have to be some pretty big event to do that…you’d think…and it sounded like Maslow seemed to think that too…but no, not so for me and my fibromyalgia. As I’ve discussed at length in a previous post, with stress being a key trigger for my fibromyalgia symptoms, at times it doesn’t take much at all to tip me into this flare-back-to-survival territory.

I can be hanging in there fairly well managing my symptoms and getting through maybe an extra overloaded few months and then someone imposes some added responsibility on me and as I’ve explained before, “one little thing (to someone else) can be the tipping point or the straw that broke the camel’s back for me and my fibromyalgia and stress capacity…and I get sent into days, weeks or even months of a flare up that I then have to work hard to “get back” from.”

Yes, the rug can be pulled out from underneath my (fibromyalgia) pyramid pretty easily at times.

And not only with major flares…I’m often getting kicked down that pyramid on a daily basis too. Real often. Sometimes it seems pretty much at the drop of a hat.

Here’s an example I jotted down on one of these days awhile back, so typical.

“I am continually knocked back down again. Like today, a bad night’s sleep last night, up looking after my sick son; today‎ fibro fog is huge, fighting fatigue. I had a lot I wanted to get done today, some of my volunteer work, another big project I have been excited to work on (I worked hard all week getting work and the chores out of the way to clear the decks to work on this project today!), even just continuing to look after my son today. Instead, I’m knocked off my feet, back to the basics…surviving…just trying to get the necessities done through the fog, so I can hopefully still get to the “actualization” things but most likely it will get shelved until another day or best case maybe only a fraction of it accomplished with my fibro fog brain and my chronic fatigue kicking in.”

And maybe the next day’s better. Or maybe that was a tipping point…and I’m knocked down a stage or two (or four)…indefinitely. (I know you know.)

You see, having fibromyalgia, I’ve found that between dealing with a range of uncomfortable and difficult, to distressing and downright scary symptoms, and pushing through crushing chronic fatigue…WHILE keeping up healthy daily maintenance routines that help to minimize all these symptoms…AND attempting to pace of course…well, all this alone keeps a certain amount of each day busy working on fulfilling those first two levels of “physiological” and “safety” needs.

Every day, a good chunk of it is spent working hard on the first two life stages, the basics of health and well-being. Every day.

And this leaves me with maybe one third, two thirds at best on a really good day, of the time that I used to have in a day when I was a “regular” person (pre- fibromyalgia), to do anything (and everything!) else…from the necessities of work and chores to perhaps getting a little “social”, “esteem” or “self-actualization” in my life…all has to be fit into that bit of time each day. And I’m pushing and dragging myself through to get that much time!

So, if anything comes up…that “available” time’s gone. A son is sick and I’m up in the night looking after him, sleep is shot, symptoms are worse, slowing me down…that time’s gone. Someone loads some extra time-consuming responsibility on me…that time’s gone. Someone loads a pile of stress on me, symptoms worsen…that time’s gone. Even when someone wants me to attend some social event…that time’s gone. MY time’s gone. My chance to maybe get something done is gone…whether it be something I need to get done or simply would like to get done…it’s gone. I then have time only to work on my most basic of needs, the “physiological” and “safety”.

I remain…at the bottom levels, still.

Yes, living with chronic illness, I’ve found I have to continually GUARD MY TIME against everyone else who would pull me away, on a daily basis.

Because when your time is getting taken away consistently, on a daily basis, besides being forever behind on life’s day to day necessities and chores, this ultimately adds up to taking away time to work on climbing up to those higher life stages kind of things whereby hopefully, I dare dream, I would get to do the things I LIKE to do!

My day to day is unpredictable enough and hard to stick to my own schedule through all these fibromyalgia symptoms coming and going amid all the “maintenance” health routines I must practice, much less fit in anything on anyone else’s schedule. When others want me to do something, my whole day has to be rearranged and geared to be available on their schedule, and with my reduced time, that will be the one thing I was able to do that day besides all the required (fibromyalgia) self care and life responsibilities I have of my own. Each time I do make time to do something for or with someone else, I’m giving away what little chance I have, to do my own thing I needed or wanted to do; it gets put aside again.

Yes, I find others can be continually taking my life away if I don’t keep vigilant about guarding against this, consistently stand up for myself, and my valuable limited time, and basically, my chance to have a life over and above the mundane day-to-day work of keeping functional (fibromyalgia-wise) and fulfilling responsibilities.

Now, I went through years and years of this as I raised my three sons, constantly giving my precious bits of “available” time away every day to fulfill their needs and wants but I didn’t mind as much, having this happen for them. I’m a mom, it’s what I do. And I knew eventually they’d grow up and they wouldn’t have so much time for me anymore; I’d get my own time then. And now that time has come and I’m forever grateful for the time I had with my kids raising them, regardless that it meant so often living at that lowest level on the pyramid, of simply having only the time and energy for struggling to meet my basic “physiological” needs each day on top of my responsibilities.

But when it comes to others outside of my immediate family, it’s a bit of a different story. I found myself dropping more and more socializing with them many years ago, because I found that every time I made time to socialize, I lost the time for my own dreams and plans in life. I would make the time to socialize because I wanted to or felt I should, then I would return home to even more limited time to do the necessary things that I needed to do as a mom of three kids and business owner.

As the years went on, I became years and years behind on, well, everything.

So many things bit by bit fell by the wayside; I just couldn’t do what I used to do with such limited available “good” time and energy each day, that is when I even HAD “good’ time or energy…remember, a certain amount of time when you have fibromyalgia is just “survival”, trying to feel okay enough to function at the most basic level. (I know you know!)

And as the years went by, I noticed something; those people I’d taken the time to socialize with…I’d watch them fulfill their dreams, reach their “self-actualization” level as mine fell by the wayside and I struggled to get the minimum required in life done…to exist…because I had spent my only available “self-actualization” time with them. I just didn’t have the time to do both any longer.

It occurred to me, as the pandemic dragged on and I heard the “regular” people bemoaning things they couldn’t do now, going out, seeing friends, saying that’s all they’re dying to do again…distraught and depressed because their life had been largely confined to their homes, reduced to simply working on the basics of staying healthy…I realized I’d lost all they grieved long ago. The pandemic hadn’t changed much for me; I didn’t find it as difficult as they did.

It was a pandemic and all that I wanted was my health…yes, I still just wanted my health. Usually I was fighting fibromyalgia; now I was working on not getting covid too…but it’s all the same to me…spending my life working on being healthy.

Maybe getting knocked down Maslow’s pyramid a few levels like this was (unbeknownst to them likely), the first glimpse into the life of the chronically ill that many had ever had.

Not that I would wish that upon them.

No, these are very nice people I’m talking about, with very good intentions, and I suppose I’d feel bad to never be invited or included in social events. But I do have to say, it’s just my reality that whenever someone asks me to do something, it’s often making me give up my dreams, my “self-actualization” level in life, because I just don’t have the available “good” time to do both.

The “self-actualization” things are the things that are often the last thing we get to work on, after all the other necessary stuff gets done. When people load more on us, even well-intentioned nice things like socializing, the dreams get bumped out, and I’m suddenly working with less “good” time to just get the necessities and basics done again, the necessities of my life responsibilities and the basics of my health “survival” and maintaining my functionality.

I end up continually using my limited “good” time to go to their party or messenger with them or attend their function. And the only time left for me is my work time, things I have to do, IF I’m even good enough to do them and not needing extra downtime for fibromyalgia symptoms or worse yet flares. (And even when I am feeling fairly well, it’s because I AM taking the necessary time that I need to do my fitness routine, to eat healthy, to pace myself, to get the required number of hours of sleep I need each night, instead of socializing, and I need to continue to do this.)

I just have way less hours in a day to work with than “regular” people for anything more that those basic level needs.

And even when I want to socialize, it’s so hard to plan ahead, never knowing where I’ll be at any given time, on the pyramid.

There’s been many times where maybe I’ve managed to be doing better with my fibromyalgia for awhile so I’ve moved up on the pyramid and I venture to plan some “social”, “esteem” and even a bit of “self-actualization” things in my life, so I accept a social invitation…only (of course, you guessed it) to suddenly get a flare and be knocked down to basics again. Now what do I do!? I’m committed to a get-together or a holiday or something and suddenly I’m at the bottom level again; I’m back working on survival! I could care less about social events now!

So again, I KNOW they’re well-intentioned and have no idea what attending their party, or carving out a time to visit, means to me…I mean, I could be already at the bottom level working on fighting my way back up or know that I’m already teetering on the edge of a flare and that attending their party will knock me off the edge. So I’m sure I’m seen as pretty anti-social to some…but I’ve lived this for over two decades now and I’ll tell you, those people are never around to help me pick up the pieces when I’m dealing with flaring symptoms for weeks or months and postponing my life and dreams yet again, for them.

So I know people don’t understand, they may take it personally because they probably don’t realize I rarely socialize with anyone, it’s not just them…but after years of my dreams continually getting pushed farther and farther away, I think of that every time people (unknowingly) want to continue to take them away, and no, I’m guarding my dreams now, I’m keeping some time and energy for them…because frankly if I don’t…who else will!?

Yes, crawling up that pyramid and getting soundly bounced down it, over and over again, throughout two decades, yearly, monthly, weekly and especially daily, it has changed me.

It has MADE me.

I am a different person now.

I wouldn’t have chosen to have fibromyalgia, but I can’t deny I have a resolute RESILIENCE and a mental CLARITY, with which to stare down anything in life I need to, that I feel GRATEFUL for.

Yes, I feel grateful. Because I don’t feel weaker for having fibromyalgia. I feel stronger, so much stronger. I’m not afraid of getting knocked down the pyramid again; having fibromyalgia, I expect I will. BUT I HAVE CONFIDENCE IN MY RESILIENCE.

Resilience.

If I would have one wish for others with fibromyalgia, it would be that they recognize their resilience, and that they have confidence in their resilience.

Because what I know is real is that climbing that pyramid over and over again, in big weekly overcoming-flare ways, in little daily getting-out-of-bed ways, there’s only one word for it…resilience. For those of us with fibromyalgia it’s a pyramid of…resilience. If you have fibromyalgia, you have it.

I know it.

I hope you know it.

So I sometimes have others who are struggling to stay afloat with fibromyalgia reaching out to me on social media, feeling pretty hopeless (understandably!), and I’ve tried to write blog posts to reach out to them. Actually EVERY post is written to reach out to them, to give helpful insight and tips born from experience, while also trying to help boost one’s mental state…some posts are even solely geared at having HOPE.

Fibromyalgia is a tough battle, a daily onslaught of physical and mental challenges. And it’s complicated.

It’s vicious cycle after vicious cycle…that’s what makes it so difficult to manage.

And I can’t even come close to conveying all that I could tell them, going on nineteen years trial and error experience with this battle, in a tweet or two, or really, in any social media message. But when I try to direct people to my blog posts, I’m sure they feel like, oh she just wants me to read her blog.

So yeah! I do want you to read my blog!

So let me explain.

I do want you to read my blog. And please use it. And here’s why and how to use it.

An analogy came to me this morning. Maybe corny, but it really feels like it fits. If you’re feeling alone and hopeless and unable to navigate this fibromyalgia journey on your own…I’ve found a life raft…stumbled upon a life raft really…and I’m balancing on it out here and I’m hoping to share it with anyone else who needs to come aboard.

I’m trying to offer my life raft to YOU. (I picture it kind of like the homemade raft that Tom Hanks’ character finally paddles off the island on, in the movie “Castaway”.)

So yes, fibromyalgia is incredibly tough but I’m doing alright…I’m standing on my raft, up here balancing, staying afloat. And I’m reaching out to you (in the water), but you’ve got to grab on and help hoist yourself up to join me. Because I’m balancing fine on my own but if I reach too far, I may just be pulled off balance and fall in with you. (Managing fibromyalgia is an incredibly delicate balance!) Oh, I’m sure I could hoist myself up again, but I’ve done that too many times before (fallen and hoisted myself up) and I know how NOT to do that now. I need to keep a fair amount of my focus on my own balancing.

So I’ll reach and provide the raft, the tool, my blog, but you have to hoist yourself and get on the raft (and read) and learn to balance up here with me.

And I’m not alone on this raft anymore. I’ve already got company, others who are using my blog, reading it often, and we chat up here and get through our journey together. Some are pretty vocal and I know they’re always here…and we’re supporting each other. Others have silently crawled on by themselves and are quiet, until once in awhile they pipe up and let me know they’re on board…they’re reading and benefitting from my blog.

And it doesn’t matter to me if you want to chat or not (we don’t need to, but I’m happy to)…but COME ABOARD!! My hand is here, reaching out.

Grab it.

And start reading. Every post is filled with TIPS and HOPE…that’s it in a nutshell. Tips to help you navigate this fibromyalgia journey and hope to keep you afloat. Yes, hope is in every post because, well, first of all, I do believe there’s SO much to be hopeful for! And second, well, that’s maybe the toughest part of battling the ever-changing onslaught of scary symptoms, pain, and overwhelming fatigue that is fibromyalgia, keeping ourselves afloat mentally, not losing hope…so we can wake up each day with the courage to face another day of trying to function in our fibromyalgia lives.

So I’ve found, having fibromyalgia, I have to seek out hope…and cultivate it…and nourish it…truthfully, with fibromyalgia I find hope has to be fed pretty often(!) and personally I’m aiming to thrive, so I’m feeding and building my hope in some way EVERY day…because I want to be functional EVERY day.

And I’ve included everything I can possibly think of that has helped me to be functional for close to two decades now while living with fibromyalgia…every tip, every insight, every strategy.

Because I’ve found that significant lasting progress has come from the compilation of all these tips and strategies and adjustments gradually chipping away at it over time.

What may be helpful, what may not, how to think…the posts include it all…tips on how to live with it, how I’ve lived with it specifically, tips that I think could apply to others. It’s the experience of nineteen years of coping and functioning and (still actually) LIVING with it, talking.

You are not alone. I know what you’re going through. All of us with fibromyalgia, and there are many of us(!), know what you’re going through.

So grab onto the hand that is reaching out to you and TAKE IT. OPEN YOUR MIND and READ. Find what resonates with you…everything may not…but something will! And hold onto that and let it help you get through another day. Then read some more and find another tip or strategy or little gem that resonates with you, that perhaps triggers hope, and use that to get through another day. Tie your hope to something…anything…anything positive…until you feel strong enough for your hope to be solidly anchored within you.

If the posts are too long, read parts, even paragraphs, treat it like a book and just read bits at a time, read when and what you want, and then come back to it whenever you can. Do some of it, do all of it…whatever you feel fits for you.

Am I an expert? No, of course not, and I’ll be the first to admit that. But I do try to provide a path to experts; that’s why I include my occasional “book share” posts, summarized on my RESOURCES page. I seek out experts on topics I feel would be super helpful for someone with fibromyalgia and I write a post highlighting why I believe their expertise would be useful to us.

As for myself, I’m simply writing from experience. And sure, I bring my own life circumstances to it, and my lifelong baggage, who doesn’t? But that’s where your part comes in, to read and see what tips may apply to you.

You may not agree with everything I say and we don’t have to be tackling fibromyalgia in the same way…exercise/don’t exercise, meds/no meds, healthy diet/or not, other chronic illnesses/no other chronic illnesses, etc. etc. Fibromyalgia is a complicated condition with many facets to it, and I understand people are trying all sorts of treatments, but no matter what we are doing different, I have to think we have far more in common than not. Too often these days people let their differences divide them, whereas differences are actually more likely a strength; differences bring different points of view and when combined, a stronger, wiser, overall perspective.

So yes, even though people feel we may be having different fibromyalgia experiences and coming to the table with different baggage and even other chronic illnesses in tow, I strongly believe we are fighting the same overall battle.

My hope is that individuals use what they can from my blog to further their own battle, that they PICK OUT WHAT CAN APPLY to benefit their own situation.

And on the topic of other chronic illnesses, occasionally another fibromyalgia person will tell me they are different than me, they have one or more other chronic illnesses as well as fibromyalgia, and it sometimes seems they are implying my experience doesn’t apply to them and is of no use to them.

I definitely feel for them, that does further complicate (to say the least!) an already complicated illness. My other debilitating chronic illness is far in the past and while I currently have my own personal conditions I deal with that impact my fibromyalgia, I can only imagine how much more difficult it must be to be dealing with multiple debilitating chronic illnesses at once.

But what I would say to them is that my blog could present an especially useful opportunity to them in a way maybe they hadn’t considered.

Having multiple chronic illnesses, I may be wrong, but I would think one would have a hard time distinguishing which illness is causing what (hell, it’s incredibly difficult to figure it out with fibromyalgia alone!). Maybe it doesn’t matter…but then again, maybe my blog could highlight the fibromyalgia aspects for them, including some possible ways to tackle these aspects, which could help them immensely to have one illness a little more under control and not impacting the other illness(es) as much and hopefully help to mitigate what I would think would be vicious cycles between the multiple illnesses. Something to think about for them but I definitely take my hat off to them and bow to their thoughts on the subject!

But I have to admit I still hope they join others and read…and catch my enthusiasm, my attitude, my motivation. I mean, enthusiasm is contagious, energy is contagious, positiveness is contagious, a fighting spirit is contagious…I write to spread all of these in the hope that you will catch them all!

And reread. I have a little book that helps me keep my spirits up and I read a little every night…and I’ve been reading the same book over and over again now for a couple of years. The lift it gives me never gets old. I don’t want to read all these little life gems and tips and strategies and forget them in a week. No, I’m rereading them and internalizing them…I’m keeping them at the forefront of my mind and using them to keep myself afloat. And once in awhile, one of those little gems or tips or strategies will especially resonate with me in a whole new way maybe due to whatever’s happening in my life that day, or perhaps I’ve had a great night’s sleep and feel more open minded, and that kickstarts a whole new life for me!

And this is what I hope my blog can be for you.

And I know it works; I’m hearing from people telling me it works. They use my blog in this way.

And speaking of hearing from people, which brings me back to my analogy…sometimes I hear from people and I can tell they’re on neighbouring rafts, they’re over there balancing on their own raft…and they shout out to me and we exchange a few words and knowing nods of acknowledgement of our fight and our spirit and our determination.

And some of you will undoubtedly be watching and waiting for that big rescue ship to come (a cure!) and who knows? Maybe it’s coming, someday…but me, in the meantime, I’m not only staying afloat, I’ve seen a few familiar markers again (some key improvements in my functionality that I had thought were long gone) and I’ve gradually realized that, all this time I’ve just been trying to stay afloat, I’ve actually been moving towards shore on my own power…slowly…but surely, yes I’m moving!

The original plan was just to stay afloat and of course that’s always key, but some time ago I was rather shocked to realize I had been very gradually experiencing good solid lasting improvement in my fibromyalgia…possibly even a recovery of sorts.

(But of course, time will tell on that. I’m happy just to keep floating and functioning and living!)

So yeah, to stay with my corny analogy, I’m not waiting for the ship (that may never come)…I’m moving towards shore on my own power!

Yes, I’m on my way to shore.

And whichever you lean towards, waiting or powering your way to shore, you’re welcome to come on board, come stay afloat with me.

Yes, join me. JOIN US.

Get on a raft, get up here, we’ll help you balance. Just reach out. Do this with us.

Come aboard, there’s no need for you to be down there alone.

I’m right here waiting for you. (WE’RE right here.) Functioning and living my life. Join me.

Because what I know is real is that only you can take my hand and pull yourself up.

Only YOU can ACCEPT the support, only YOU can OPEN your mind, only YOU can DECIDE to work on changes, only YOU can CHOOSE to be proactive.

Only YOU can CHOOSE HOPE.

So yeah, come aboard.

(And please…read my blog.)

So I often hear others say “Fibromyalgia is different for everyone” to preface that common conclusion they make next (that I’ve discussed at length in my last two posts) “Different things work for different people”.

And I always get the sense that there is this general feeling that the fibromyalgia journey we each get is some willy-nilly luck of the draw kind of thing that befalls us.

And sure, there’s likely some degree of that luck of the draw stuff, but what if there’s something else at play here too?

Because I wonder…is fibromyalgia TRULY different for everyone?

Or is it the same basic underlying causes and triggers driving it for everyone…BUT is everyone DOING DIFFERENT THINGS and thus MAKING THEIR FIBROMYALGIA JOURNEYS DIFFERENT?

 So let me explain.

I’ve long felt that my own fibromyalgia journey would be so different, without a doubt, if I had taken a different route, if I had not almost immediately reactivated my proactive “combat mode” that I had discovered long ago during a previous chronic illness, whereby “I would try doing anything I could do to feel as healthy as possible in every other way”.

I was just trying to build up the good, to feel as good as possible and have as much energy as possible…to outweigh the bad (of fibromyalgia) as much as possible. And it has worked far beyond what I ever could have expected. It has boosted my overall health and immune system so much so, that it’s kept me functional over the years and even (unexpectedly) set me on a path of accelerating improvement!

(Not that I don’t think anyone can adopt my approach AT ANY TIME during their fibromyalgia journey and begin to reap the same benefits…I definitely one hundred percent do!)

But keeping functional in our lives…wow, that’s the holy grail of fibromyalgia, isn’t it?

Which leads me to another thing I think of when I reflect on the path of my fibromyalgia journey. I often ponder what my journey would have been like if I had not been forced to stay OUT OF BED, to stay UP and MOVING, to keep living my life to raise my three kids. I’m not sure I would ever have been compelled to learn that fine line balance between pushing and resting (pacing I guess) that is so key to limiting fibromyalgia’s grasp on our lives and keeping…functional.

So I wonder…if I had had the chance to stay in bed all those days my body seemed to beg me to, would my path have been completely different? For after all these years I am fairly certain that keeping moving and living (and pacing!) has ended up being the absolute best prescription for keeping FUNCTIONAL all along the way.

So as I discussed in a previous post, between my “combat mode” approach and my hard-earned pacing prowess, I’ve managed to achieve and sustain a level of symptoms that I am fine living with, that I can still function in my life with, allowing me to stay off ongoing medications.

Which brings me to the next thing I wonder about at times…if I had taken medications and not been forced to trial and error gradually figure out how to minimize my symptoms in A DIFFERENT WAY…by confronting and dealing with the UNDERLYING FACTORS AND TRIGGERS DRIVING MY FIBROMYALGIA on a daily basis…I wonder…would I be on the same journey now?

Because I’ve come to realize that UNDERSTANDING WHAT MY TRIGGERS ARE and LEARNING HOW TO MINIMIZE THEM AS MUCH AS POSSIBLE has been key to making staying out of bed a whole lot easier to do(!)…AND key to keeping functional all along the way…and still very much is, over eighteen years later…and I suspect it always will be.

And speaking of medications, I’ve talked at length about what I know about them (nothing!) in a previous post, and whether someone makes medications part of their fibromyalgia journey or not, of course that’s a personal decision based on each person’s individual circumstances…of course. But there are a few things I’ve wondered over the years.

Now, I’ve admitted I don’t know a heck of a lot about taking medications for fibromyalgia, but…I do have a lot of experience with NOT taking them…going on nineteen years of experience of living fibromyalgia without any ongoing medications.

So I may be wrong, but it seems to me that medications for fibromyalgia serve as temporary fixes, for symptoms in the moment…they bring welcome relief for the battle at hand.

 But something I’ve learned to consider and to be careful of, is that my temporary fix is not setting my overall fight back…that I am not winning a battle at the expense of losing the war…at the expense of the journey.

Sleeping pills may be a prime example of this. Many things will knock you out and make you sleep but sleep experts will tell you (as in the book THE SLEEP SOLUTION that I just featured in my last book share post) that “Sedation and sleep are not always the same thing.”. And these experts say that while one is sedated (by sleeping pills), making them FEEL like the are sleeping, their sleep cycles, in fact, are often not cycling through the appropriate stages leaving them lacking in the robust amount of deep sleep that we all need, to gain all the restorative benefits that go with it. Restorative sleep…PING…key for all of us, but particularly those of us with fibromyalgia!

So the sleeping pills fool one into thinking that they are getting sleep, but that is not what the experts call sleep, and on an ongoing basis, I’m not sure it’s what we need to win the war…in fact, long term, I wonder…maybe it’s making one worse. Because while one is being lulled into this false sense that they are getting good sleep, they are likely not continuing to search to find out what they truly need to be working on to get actual restorative sleep. And as time goes on, their body goes longer and longer deprived of restorative sleep and all the much-needed benefits that go with it.

Not to mention (the sleep expert says) “the fact that a growing body of evidence is potentially linking some of these pills to memory loss, confusion, or even dementia with prolonged use.” Yikes! It’s not like we don’t have enough of that already! (fibro fog!)

(And when you consider I even believe it may be the restorative sleep I’ve been getting since I fixed my sleep that has finally put my journey on a gradual healing path, possibly even a recovery path…well, I’ll just say please read my previous book share post if any of my thoughts about sleep resonate with you and if you’d like to learn what sleep experts actually recommend to help you sleep.)

And really, I sometimes wonder if sleeping pills may not be the only medication that while working as a temporary fix for fibromyalgia symptoms, could be actually impeding one’s long-term battle with fibromyalgia.

I’ve gradually come to believe that would have been the case for me personally, had I taken ANY ongoing medications for my fibromyalgia…that my long-term battle with fibromyalgia would have been hindered more than helped. As I said in an earlier post, “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.”

What I meant by that was that 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!).

Because medications take away the symptoms. (That is the whole point of them, right?)

BUT…my symptoms are what guide me.

They signal to me that I’m not managing my triggers well, maybe I’m allowing myself to be too stressed or I’m not getting enough restorative sleep. They signal when I need to address these stresses on my system and get back on track. And when I AM able to get the symptoms to subside again, on their own, by getting back on track, that signals to me that I’ve been successful at alleviating the (over)stress on my system.

Had I been taking meds, I know I would have pushed myself too hard, and very likely made myself worse. The meds would have allowed me to push past my limits, to keep doing the “wrong things” that were putting more stress on my fibromyalgia body and brain than they could handle.

But I would never have known this, with the meds taking my symptoms away, because the symptoms are the only way I knew I was overdoing it. Does that make sense?

(Not to mention, adding in the additional confusion that I’m not sure I would even know which are side effects of the medication(s) and which are actually (triggered) fibromyalgia symptoms indicating I need to pull back within my limits again…as it is, it took me years of muddling through, monitoring my symptoms to figure out my key triggers, without any medication side effects thrown into the mix!)

So as I said in the previous post, this “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?”

Again, obviously the medications decision is a personal one, and at some point I may be forced to make a different decision than I have to date, but I wanted to put my thoughts out there for others to consider within the context of their own circumstances in case anyone is trying to make this decision.

The only other thing I would say is I’ve had the experience of agreeing to go on a medication, for a previous chronic illness, that I didn’t research enough. I was young and new at navigating the medical system and I completely trusted my doctor. Much later I discovered it to be a controversial drug and I’ve heard that some with fibromyalgia even feel it was the cause of their fibromyalgia. To this day I honestly don’t know if it really helped me or really harmed me or both, but it’s water under the bridge for me at this point.

But I know for sure, if I should at some point feel it necessary to begin taking any ongoing medications for my fibromyalgia, I will be researching their short-term side effects and long-term consequences as much as humanly possible!

So yes, now that I think about it, it’s probably a good guideline to use to assess ANY potential fibromyalgia treatment…its short-term side effects of course, but maybe even more critical, its LONG-TERM CONSEQUENCES. Because from what I’ve experienced, fibromyalgia IS a LONG-TERM BATTLE, so whatever path we choose, either the benefits of, or possibly some unfortunate consequences of it, will be catching up with us somewhere down the road.

Because it does seem to me that maybe fibromyalgia’s like a lot of things in life…maybe we CAN choose our own path to some degree…maybe we CAN forge our own journey…maybe we CAN even turn it around at any time and reforge our journey!

Sure, there’s some luck of the draw in there…and of course there are so many factors affecting the course of an illness, certainly unique to each individual and their circumstances…of course.

But I always want to think I can have a say in the course of my life and while fibromyalgia may end up different for everyone, I certainly feel like I’ve had some say in the fibromyalgia path I’ve ended up on. And I plan to continue to have some say in it.

And what I know is real is I genuinely believe all of us can have some say in determining the fibromyalgia journeys we end up on.

Maybe fibromyalgia doesn’t have to be so different for everyone, maybe we can ALL be functioning…and living…and at times even thriving in our fibromyalgia lives!

Maybe…even you can.

So in my last fibromyalgia post, I wondered…DO different things work for different people (as so many say)…OR does it depend on what you are trying for? As in, whether you’re trying for managing day to day symptoms or for long lasting improvement?

I wondered…big picture…if there IS only one approach that puts us on the path of consistent functionality and enduring overall improvement.

And I’m still wondering.

I’m wondering smaller picture now…as in, managing our day-to-day fibromyalgia symptoms…DO different things work for different people?

Or are these different things that work for us really, in essence, THE SAME THING?

So let me explain.

I said in my last post, “And all those seemingly random fibromyalgia symptoms coming and going… not only have they happened less and less over the years…but by the way, I’ve found if I just keep working on my overall underlying health (my combat mode) each time they crop up, THEY GO AWAY.” (Not right away, of course, it takes a bit of time to focus on whatever I’ve slipped up on and for it to play out in my body and make them go away, but I AM able to make them go away.)

And I said “seemingly random” fibromyalgia symptoms because I wonder…are they really that random?

OR…are they all reactions to our triggers? (Very well-disguised reactions to our triggers!)

And speaking of triggers, I think that maybe it’s not so surprising then that this approach I spoke of (my “combat mode” approach), whereby “I would try doing anything I could do to feel as healthy as possible in every other way” has, besides leading to gradual, long lasting improvement in my overall fibromyalgia, also helped me to reduce what I’ve gradually learned to be my key triggers for my day-to-day fibromyalgia symptoms all along the way…and hence, MAKE THE SYMPTOMS GO AWAY.

Yes, working on my overall health has incidentally hit my key triggers all along the way, these being poor sleep and stress (of ANY kind, physical or mental).

Because as I said in the previous post, when I do an online search of “good sleep”, I find “exercise regularly”, “healthy diet”, and “reduce stress” among the top tips. And when I search “stress reduction” I find “exercise regularly”, “healthy diet” and “good sleep” predominant on those lists.

It turns out these are all the things I’ve been consistently working on as I’ve tried to be “as healthy as possible in every other way” and as you can tell, and I talked about this at length in an earlier post, “these key things seem to work together and depend on each other”.

Which brings me back to that statement I always hear so many with fibromyalgia say…”different things work for different people”.

Whenever I hear someone saying a certain treatment has worked for their fibromyalgia…I guess it’s my own experience, from the over eighteen years I’ve had fibromyalgia, of seeing how intertwined these factors are that affect my own fibromyalgia, combined with my research background, that trained me to question and seek underlying reasons…I rarely take it at face value.

I look deeper…and I wonder.

Do different things work for different people? Or are these different things really, in essence, the same thing?

So I wonder…when I see someone saying “x” works for me…is it really the face value reason they think…or is it actually working on a key underlying trigger, like maybe stress or sleep, in an indirect way?

For example, I wonder…does someone go on a new specialized restrictive diet and find a marked improvement in their fibromyalgia because they needed to eliminate these certain offending foods from their diet to improve their fibromyalgia? Or is it the positive, excited, uplifted mind-set they get from feeling empowered (and not so helpless)‎ that they actually CAN do something and affect some change to help themselves? I mean, in the face of CONSTANT roadblocks thrown at us daily as we struggle with fibromyalgia…continually making us feel helpless and hopeless…certainly the mental boost of such a positive undertaking would help reduce stress?

I certainly know, after living with fibromyalgia for over eighteen years now, anything that is positive, boosts my mind-set, feels empowering…lowers my stress, a key trigger for me…will therefore definitely improve my fibromyalgia too. Why, my own “combat mode” totally fits the bill here…as I said in my post about my healthy diet, “I’d even be willing to bet the placebo effect IS part of the benefit of eating healthy for my fibromyalgia symptoms. I know I feel positive and pro-active when I make a diet change to eat healthier.”

Moreover, if any weight loss comes with it (the diet change), who doesn’t feel lighter, more energetic, hence less lethargic…happier…less stressed?

And I wonder…when I hear someone say they get a massage or soak in a tub to help relieve their fibromyalgia symptoms…well, of course it helps their body but is that the key thing it is helping for our fibromyalgia? Because I have to think getting a massage or soaking in a tub would be relaxing…as in, relaxing and letting the stress(!) just seep out of their body.

And speaking of relaxing…I wonder this too…does resting in bed for a day rest your body…or your mind? I mean, obviously both, but which is the key one it is benefitting for our fibromyalgia? If it rests your body, and that’s what’s needed, that’s great and one should do it.

But, and this is purely a personal preference, if it rests my mind (and that’s what’s needed because I realize I’m overly stressed and this is flaring my symptoms), is there another way I can rest my mind (and therefore lower stress)? I mean, can I find another way to rest my mind (to lower my stress and therefore my symptoms) and still be able to do things and not lose a day resting in bed (at least that is the way I feel about it…losing a day…again, purely personal). That’s if we even can stay in bed, if we have that option in our life at the moment.

For myself, I’ve learned to go about my day WHILE I GIVE MY MIND A REST…no, not always easy, while under the mental strain to get things done and try to function while I’m in pain and/or exhausted or experiencing any of the multitude of weird and wonderful (sarcasm!) symptoms we experience at any given time…but I’ve found it’s possible. Of course I’ll move more carefully, slowly, if I’m in pain, that’s a no brainer…eases the body and the mind.

But this will be one of those days that I’ve talked about in previous posts, when I change what I think to take the pressure off myself of everything that my life is requiring of me and I’ll think in terms of just allowing myself to be satisfied with simply getting through the day, whatever it may require. Maybe I’ll pick easy things to do if possible, a lighter load…or even take a break from the norm of everything I have to be doing and simply do some enjoyable things, a “mental health day”…these always ease my mind and lower stress. Or if this isn’t enough, I’ll lie down for a bit here and there to try to totally relax my body and mind, almost a mini meditation I guess, and failing that a nap on the couch for a bit.

Oh, and breathing, just BREATHING can be a lifesaver on these kind of days…all I truly need to do is “just breathe” today, is the way I’ll often think about it. I try to remember to focus on deeper breathing with the techniques I learned in the self-help book “OVERCOMING Traumatic Stress” that can be so helpful in helping one get grounded, lessen tension (stress!) and even promoting deeper sleep (bonus!).

But by all means, if lying in bed for a day or so helps someone to refuel, to recharge, in whatever way they need, if that is your preference or you feel your only choice, yes, of course do it. This is purely conjecture, something to think about…but I wonder if maybe learning to de-stress without having to crawl in bed might just be another possibility that may work at times…another tool in the fibromyalgia toolbox.

And speaking of de-stressing, what about something like CBD oil, the latest wonder cure-all? Does it help some with fibromyalgia pain because it’s actually changing something physically in their body that is helpful or is it simply helping to reduce anxiety and depression and increase relaxation, therefore lowering stress and resulting in less symptoms? I wonder…

I even wonder about exercise…one of my main go-tos…is it helping because it loosens up my body helping to keep it functional? Sure, definitely…and over time it has helped me to rebuild, increasing my stamina and energy level. But maybe the even bigger benefit is it’s helping me with boosting serotonin levels while also promoting better sleep, thereby helping me to evade depression and hence lowering stress too.

And I often wonder…would someone still enjoy all the benefits I get from working out if they hated everything about it? Let’s face it, it’s no secret that exercise is just not ever going to be on some people’s top ten (or even top hundred!) things they like to do.

For myself, I WANT to keep getting the benefits I’ve known for so long, so I get a sense of accomplishment from getting through a workout…I’ve achieved something hard to do…so I get a positive overall from it. And I have confidence my workouts are a good thing, are helping me on the whole, so I don’t get stressed about the fake pulled muscle thing I occasionally get or if they tire me out worsening my fatigue some days…after all this time I know by now from experience that all those things are temporary. But I always wonder if someone hates everything about exercise, does that negate a certain amount of the benefits…is it going to help them lower their stress level as it does me?

So I guess what I’m trying to say is…look deeper. Question why something’s working.

Because yes, I guess it’s “different things”, technically…but to me, I SEE IT ALL THE SAME.

I can’t help it, I’ve been living this fibromyalgia thing for over eighteen years now without any ongoing medications; it’s second nature to me by now to look deeper, to always look for the underlying reasons so I can make the changes necessary to lessen my symptoms. I look at all these things that people say works for them through this lens. And almost every time, if not every time, someone tells me something that works for them, I notice it also would help lower their stress level and/or help them sleep better as well.

And when you think about it, there’s a ton of things that we could do that could lower our stress level, and/or help us to sleep better, and for so many various reasons, many even unique to each individual.

Massages, meditation, weighted blankets, etc. etc.…wow, I could fill pages listing them. Not to mention that certainly, almost any new thing we try and commit to, could additionally give us a mental boost…boost our mood, our positiveness, our endorphins…leading to a decrease in stress, which could also help us sleep better etc. etc. Why, at a minimum, just feeling that I’m doing something that may make a difference, that I can exert some influence and control for myself…or that someone else is helping, perhaps my doctor…that help is on the way…always lowers my stress.

So yeah, different things work for different people…sure, on the surface.

But I wonder, when I look a little deeper, when I seek the underlying reasons…ARE all these different things that work for us really, in essence, the same thing…in the sense that they are all pretty much DOING THE SAME THING?

And why look deeper?

What does it matter…why look deeper…if something seems to be working?

Well, understanding “why” something works…can give you OPTIONS, maybe options you didn’t realize you had.

Maybe you don’t have to be on such a restricted diet…maybe a healthy diet will do the trick. Maybe you don’t need to spend so many days in bed…maybe sometimes a “mental health day” will do the trick. Maybe you don’t have to deal with short term side effects and only limited known knowledge about the long-term effects of the latest “cure-all”…maybe say, meditation or exercise, will do the trick. Maybe you don’t have to do an exercise you hate…maybe you can figure out one you like that will do the trick. Maybe you don’t have to pay for and take time out of your life for specialized treatments…like all the rest of these things, maybe something else will do the trick.

And maybe, just maybe, the most important part of this is, you can figure out truly what is triggering your symptoms.

Because I can tell you, I’ve been looking deeper, I’ve been seeking the underlying reasons, for over eighteen years now, and it most certainly has helped me to figure out my triggers. I know them well. And I‘ve learned to live in a way to avoid them as much as possible and minimize them as much as possible, so much so that flares are pretty much a thing of the past by now; I can’t remember the last time I had a significant one.

And what I know is real is that life with fibromyalgia just gets better and better because I’ve found that functionality and progress over time has come from MANAGING THE UNDERLYING TRIGGERS WELL.

So I will keep wondering. I will keep looking deeper. I will keep noticing whether these “different things” are really that different. And if you notice something that works for you, I hope you’ll wonder too…and you’ll look deeper…and seek to understand the reason.

Because maybe.

Just maybe.

You have options you didn’t know you had.

So I’ve been getting my life back these last five years…my full life…particularly my energy…my time…my feeling of well being. Ever so slowly, but surely, it’s all coming back.

And the major thing I changed?

Sleep.

I FIXED MY SLEEP.

That’s what I attribute it to.

Almost four years ago I wrote in a post “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.” And I’ll tell you, four years later, as MY OLD SELF CONTINUES TO INCREASINGLY EMERGE AGAIN, I still believe that now more than ever!

And wow, I’ll also say, for those of us struggling with the daily chronic fatigue and the nightly painsomnia of fibromyalgia, working on our sleep may feel like the most formidable, if not impossible, task we could face. I know…it took me over ten years to face it.

Now, I’ve already written a couple posts as a layperson trying to convey some key things I’ve experienced myself with respect to sleep and fibromyalgia over the years. But I’ve also read a couple books by foremost sleep experts, so I know enough about sleep to know that finding a sleep solution is not going to be a one size fits all.

But here’s the thing that always strikes me when I read one of these books…when one personally gains an UNDERSTANDING of the inner workings of our brains and bodies with respect to sleep and then sees the SOLUTIONS laid out in front of them, it always amazes me, how easy it is to PINPOINT your specific sleep issue and what you are doing wrong, how much SENSE these solutions make, how incredibly DOABLE they are and how YOU JUST KNOW THEY WILL WORK ONCE YOU NOW UNDERSTAND!

CLICK BOOK TO BUY

So I wanted to share a resource that I’ve recently sought out in hopes of giving you too the underlying knowledge to hopefully help you too…to fix your sleep.

So let me explain.

The book is “THE SLEEP SOLUTION Why Your Sleep is Broken and How to Fix It” by W. Chris Winter, MD.

 And I just want to say, right off the top, as someone who’s had fibromyalgia for over eighteen years now (diagnosed seventeen years ago), I found SO MUCH in this book I could identify with, the good and the bad. As I described in one of my previous sleep posts, “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”…and this book made it all make sense!

Right from the start, the book reinforced (and explained) what I’ve been seeing playing out in my body for over eighteen years now with fibromyalgia. Only, everything I’ve suspected (and much I hadn’t), as simply a layperson, was confirmed by a leading neurologist sleep specialist!

And I really can’t emphasize enough how enthused I was as I learned more and more actionable information while reading this book and how excited I am to be passing it on to you.

I mean, Winter makes this complex issue of sleep especially easy to understand; he clearly explains what can disrupt our sleep, then translates that knowledge into the creation of strategies that are easy to implement, resulting in fairly quick improvements in sleep habits. I found him to be endlessly encouraging with a casual, light-hearted conversational style, while not only reassuring readers that ACHIEVING HEALTHY SLEEP IS POSSIBLE but also showing us how to frame the way we THINK about sleep and how to make the most of the sleep we DO get. And honestly, having fibromyalgia, that had been the name of the game for me for soooo long, making the most of the sleep I did get. (I know you know.)

And having fibromyalgia there’s something else that I really took note of…when Winter assures us that achieving healthy sleep IS possible, that we “absolutely can sleep”, and that he’ll show us why ours isn’t working and help put us back in the driver’s seat…well, this gives me hope for others with fibromyalgia who are struggling with their sleep and have been told that those with fibromyalgia are just not able to get restorative sleep.

This is my second book I’ve read by a foremost sleep expert and I’ve still not seen much credence to this belief that some people just can’t attain healthy sleep as I’ve seen some with fibromyalgia say.

Conversely, Winter explains that sleep is one of the foundational processes within your body that you CAN actually change, and that along with nutrition and exercise, it is one of the three main pillars of good health that we can exert some control over. And when he says that “sleep is an amazingly important process that happens in our bodies” I mean, I don’t need any convincing…I’ve witnessed it and I’ve lived it.

Many many years ago I got my first lesson in how vastly we are affected by poor sleep, far beyond my expectations or my own personal experience at that point. I was familiar with the common concept, if we don’t go to bed in time to get enough hours of sleep (I assumed based on my own experience that when people went to bed, they fell asleep, and stayed asleep)…we will be tired the next day. (Oh, how little did I know back then.)

But my young son, close to twenty-five years ago, set me on a journey of learning about sleep that would significantly change my understanding of how sleep works (and why it doesn’t when it doesn’t) and the far-reaching affects on us of poor sleep, the depths of which I suspect are still not fully known.

I would put him to bed, expecting him to fall asleep in a usual amount of time, and he wouldn’t…he would lie there awake, he would come out of his bed for any reason he could dream up, he would be dead tired, yawning, all the signs of being super tired were there, and still…he would not fall asleep.

And when he started school and had to get up at a certain (early) time five days a week, then the fun began! He wasn’t getting quite enough sleep, often five out of seven nights a week. And it showed, all the effects of consistently inadequate sleep, likely amplified on a little boy his age. His behaviour was affected, his ability to focus, his attention span, his temperament…at times I could see his entire sense of well-being was not intact when he was overtired. And this was when he was short‎ maybe only an hour of sleep each night.

And initially we looked for and tried all the usual things anyone thinks of…an appropriate bedtime, warm milk before he goes to bed, warm bath, a nice consistent low-key bedtime routine etc. etc…it seemed like we were doing all the right things and we had been for years. But I would learn these were all band aid types of approaches that only helped minimally because his particular underlying sleep issue was not being addressed.

I learned this because I delved deeper and I found an excellent book by a foremost sleep specialist.

And honestly, I wasn’t even that far into the book before I knew I’d hit the jackpot! It explained a lot(!)…in terms of what we had been seeing with our son…even things about him that we had no idea were caused by inadequate sleep…we’d thought maybe something else was going on with him too…it explained. Yes, it was all there, all his issues easily explained, all the knowledge of the underlying factors driving sleep, and all the solutions laid out step by step.

Once I understood these underlying factors driving sleep, it became clearly apparent this would be fixable. What had been so puzzling to me…the issues I had been seeing with him…made perfect sense now. And so did the solutions.

So we fixed his sleep.

I found out, in reading the book, that we had been doing almost everything right, but for a couple key things in our routines that we easily changed once we knew what they were. We started near the end of one school year, there were positive changes right away, and two months later when he started back to school a consistently rested little boy, I almost jumped up and down with glee when in our first parent teacher interview of the year, the teacher, who had also taught him the previous year, started out the interview with “He’s a different boy”!

And he actually was like a different boy, in so many ways. There were some surprising changes in him that I hadn’t expected, the consistent lack of sleep had been affecting him far more than I had ever realized (and I had realized he was incredibly affected!). Why, I even noticed a difference in my other two sons who are generally good sleepers with respect to how fast they would fall asleep at night when the odd time we would deviate from these newly learned better sleep routines that our entire household was now doing.

So I’ve witnessed firsthand the stark difference and the all-encompassing impact poor sleep can have on an individual.

I shudder to think of what behaviour disorders teachers would have urged me to get my son diagnosed with and how many diagnoses would have been piled on had this went on for years and likely compounded, had I not figured out that sleep was the underlying issue for him and fixed it early on. And close to twenty-five years later, he still knows how to regulate his system to sleep when he wants to. He knows how to manage his sleep issue for the rest of his life now, no sleep medications needed.

What I had learned that had solved the problem was that our ability to fall asleep and stay asleep depends on far more factors than the surface things that most of us know, and that these factors are affected by things WE can easily do or not do.

Of course, there certainly is a place for these often-seen sleep tips like warm milk, a warm bath, dim lighting etc. before bed that many of us know and do, and I guess for some this may be all they need. But I learned that many of us, like my son, need to make sure the core underlying sleep factors in our bodies are in place or no matter how tired we are, if these physiological things have not happened within our bodies yet, we will not fall asleep.

And I’ll admit I found it fascinating, to be able to understand and fix an issue like this ourselves, so much so that I continued to keep my eyes open over the years, reading everything I’ve come across on sleep issues and sleep advice for close to twenty-five years now, to continue to find any additional tips that may make it a bit easier for him to manage his sleep.

And throughout the last seventeen of those years, since I was diagnosed with fibromyalgia, you guessed it…I’ve been gleaning these tips for myself too!

But I was a different case than my son, my sleep problems leading up to when I got fibromyalgia were of my own making…my own decisions to deal with my life circumstances at the time. Maybe that made it easier for me to fix my sleep in the end‎, because I had previously always been a good sleeper. Regardless, these decisions started many years of dysfunctional sleep (sometimes I wonder if it was in fact a contributing factor in causing my fibromyalgia), leading into compounding issues with the chronic fatigue and painsomnia of fibromyalgia as well.

So as I explained in a previous post, after dragging myself through over ten years of living with fibromyalgia, I final got fed up with my own role in my messed-up sleep and I diligently worked on breaking a bad going-to-bed habit that I had fallen into from years of having fibromyalgia fatigue and that I knew was affecting my night’s sleep.

And I broke the bad habit…and it fixed my sleep.

And unbeknownst to me at the time… I would realize a few years later…this was the beginning of ever so gradually fixing my chronic fatigue too!

I would realize later this bad habit that I had finally fixed had been the last thing standing in the way of me getting good restorative sleep; as we’d experienced with my son, I had been doing everything else right. And like my son, the resulting changes have been far more than I ever expected or wished for. I had no idea a few years later I would suddenly realize that it had happened so very gradually that I hadn’t been noticing, but astoundingly, my chronic fatigue was now largely gone!

And I certainly had no idea the far-reaching changes I’d still see trickling in over seven years later, and by changes, I mean specific tangible improvements in my fibromyalgia…and I mean unexpected and astonishing, but totally welcome changes.

Changes like less and less flares and unexplained symptoms…changes like first noticing I was able to keep up with my family’s pace on a holiday again, then more recently realizing that pacing is hardly an issue for me at all any more(!)…changes like noticing a defining improvement in my cognitive skills of being able to competently tackle challenging “thinking” tasks again…changes even recently, being astonished to notice that the slight numbness that had spread to my full body over a decade and a half ago in my early fibromyalgia years is now suddenly gone…and last but not least, changes to my daily sense of wellbeing (I can’t remember the last time I felt that horrid “walking corpse” feeling that at one time was almost a daily occurrence…good riddance!).

And I realize all these gradual changes are little by little “undoing” my fibromyalgia.

Now, I’ve said it many times, I’ve always believed my fibromyalgia is a “brain thing”, that it feels to me like the underlying cause resides with something amiss in my brain.  And of course, I’m not an expert by any stretch but I’ve wondered if the restorative sleep I’ve been getting has been ever so slowly, over the last seven years, HEALING my brain and therefore “undoing” my fibromyalgia.

Whether my messed-up sleep actually was a factor in causing my fibromyalgia or not, regardless I wonder if my good (restorative) sleep is HEALING IT.

I’m not sure if I’ll ever know the answer to that but what I do know, at the very least, without a doubt, MY GOOD SLEEP IS MAKING THE QUALITY OF MY LIFE WITH FIBROMYALGIA ONE HUNDRED PERCENT BETTER!

And for some time now I’ve wanted to be able to help others with fibromyalgia get good sleep and reap the benefits too. But I know enough about sleep to know that simply a layperson such as myself cannot even begin to scratch the surface of, one, conveying the complex knowledge, and two, conveying it in a way that is easy to understand, and meaningful and useful for someone else to help themself to figure out their specific sleep issue and fix it. (I mean, these sleep specialists are physicians and neurologists!)

So I wanted to find a good resource for others like the one I’d found all those years ago. And while I notice a newer edition of that book still tops the “best books on sleep” lists now, it was geared towards children’s sleep issues. So I surveyed the top sleep books by sleep specialists hoping to find a book that would be all that my earlier book had been, only geared to adults…one that would explain the underlying factors and systems in our bodies affecting our sleep…would be solutions oriented…and actionable.

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I fairly quickly found “THE SLEEP SOLUTION Why Your Sleep is Broken and How to Fix It” by W. Chris Winter, MD right up there on numerous “best books on sleep” lists.

And I wasn’t far into it before I knew why. This book did not disappoint! I knew I had hit the jackpot again with this book…and with it being more expansive for adults and up-to-date on recent discoveries having been published only a few years ago, it was so much more than I had hoped for!

Winter is, in addition to being an internationally recognized sleep-medicine specialist, a neurologist by training and has well over twenty years in the field and it shows. I was thrilled, but not surprised, to find that a neurologist would be a sleep specialist because I hoped this book might shed some light on my own suspicions about a possible link between my sleep and the underlying roots of my fibromyalgia. (And by the way, reading the book has done nothing to allay those suspicions and in fact, has only reinforced their plausibility in my mind.)

As Winter says early on, “While virtually every system and organ of the body is in some way affected by sleep, sleep resides in the brain. This is where sleep both originates and is controlled. Sleep is a neurological state, so when it comes to sleep, the brain is where it’s at.” Then he proceeds to spend roughly the first third of the book explaining sleep with respect to the inner workings in our brains (easy to understand and compelling!) and the rest showing how to overhaul it and the way we think about it.

And I was fascinated throughout as I discovered in detail what he meant when he said, “Your body is doing amazing things at night while you sleep.”

And while I’ve known for a long time the vast affect long term poor sleep can have on us, I was still a little jarred to learn of the actual major implications for our health, here in black and white spelled out by a neurologist. For instance, our brain’s ability to get rid of toxic waste products building up during the day works far better when we are sleeping, which he clearly translates the major implication to us as “Sleep problems screw up your brain and may lead to Alzheimer’s!” (or noteworthy, other neurological disorders). (And he gives a tip of a super simple behavioral change we can make right away that could reduce our risk!)

But this isn’t the worst of it…Winter explains that the effects of long-term poor sleep are most damaging to our heart and circulatory system…with weight gain, diabetes, depression and negative mood consequences, and even recent links to the development of and treatment outcome of cancer, all on the spectrum too…or basically as he says, “We sleep to stay alive.” and “When sleep is not working properly, you don’t work properly.”.

Let that sink in. “WHEN SLEEP IS NOT WORKING PROPERLY, YOU DON’T WORK PROPERLY.” Wow, this single statement succinctly sums up living with fibromyalgia!  I mean, we feel this so directly on a daily basis!

And then there’s our immune system and the fact that it’s function “is intimately tied to the amount and quality of our sleep” and that Winter points to “disturbed sleep as a risk factor for developing autoimmune system disorders.” Another eyebrow raising fact!

But really, the book was full of eyebrow raising facts…our body’s inherent drive to sleep, how much sleep we actually need (Yay! I’ve already arrived at this conclusion for myself and I’m happy to say it’s now confirmed I’m on the right track!)…AND a key thing to know, the DIFFERENCE BETWEEN BEING SLEEPY AND BEING FATIGUED and how not understanding the difference and climbing into bed when we are fatigued but not sleepy is a recipe for insomnia (I think this will explain a lot for some!).

For myself, Winter’s description of the downward spiral we can get into when fragmented sleep leaves us sleepy but becomes a demand we can’t satisfy because our sleep quality is so poor, really hit home for me. It’s a perfect description of the road I went down. And exactly as he describes I got to the point where “YOU FEEL LIKE YOU COULD SLEEP FOR A WEEK AND NOT FEEL RESTED” (sound familiar!?) and hence began years and years of my dysfunctional sleep life with fibromyalgia.

And while, as those of us with fibromyalgia well know, there can be many reasons for fatigue, and the author readily admits the role that chronic illness may play, he also explains “Understanding your sleep and solving any issues you have are the first steps to figuring out the cause of your fatigue.” Herein lies the primary reason I wanted to look for a good resource for sleep issues for others with fibromyalgia…if we can fix all we can, this could help to mitigate our chronic fatigue or quite possibly, as in my case, gradually totally get rid of our chronic fatigue altogether.

I’ve found each time I’ve done this, read a book written by a sleep expert, and I’ve learned about the systems in our bodies that work to produce sleepiness, the chemicals in our brains that mediate these systems and WHAT WE ARE DOING that either blocks or helps those chemicals, well, understandably, it gets a whole lot easier to know what to do to get better sleep. Period.

And the author explains that most likely these systems are working just fine (nice to hear)…unless we are disrupting them in some way…I now understand I certainly was.

I also now understand what the stages of sleep are, how we transition through them, their functions, and the specific consequences of disrupting them (as I did for so long).

Imagine (as someone with fibromyalgia!) my interest to discover that disruptions in one of the stages of sleep can lead to COGNITIVE DIFFICULTIES such as memory difficulties, attention problems, poor concentration, and POTENTIAL MOOD DISTURBANCES! That during this sleep stage our brain stops REGULATING OUR BODY TEMPERATURE. And that it is now known that one of the most unusual functions of this stage of sleep may be in the REGULATION OF PAIN PERCEPTION! (I know I don’t need to ask if this sounds familiar!)

Now for a long time, the relationship between pain and poor sleep has made sense, when one is in pain one sleeps poorly, of course, and who doesn’t know that better than those of us with fibromyalgia?

But now, Winter explains, studies have examined the REVERSE RELATIONSHIP, that being that POOR SLEEP LEADS TO PAIN, and they’ve found that deprivation of this same stage of sleep that causes so many cognitive difficulties has also been shown to increase the levels of pain experienced by volunteers who were healthy and pain free before the studies! The participants were more pain intolerant and these effects could be seen after only a relatively short period of this sleep stage deprivation.

Furthermore, researchers have now even linked sleep disturbances to the DEVELOPMENT of chronic pain conditions!!!!!!!!!!! I know, that’s a lot of exclamation marks, but I find this stuff mind blowing!

Yes, researchers have now even linked sleep disturbances to the DEVELOPMENT OF CHRONIC PAIN CONDITIONS!!

Let that sink in.

And when you’ve picked your jaw up off the floor, listen to this…Winter goes on to explain which sleep stages are more restorative and why and how disruption of the normal transitions between stages can leave us sleeping with less time in restorative sleep and FEELING POOR and even LIKE WE HAVEN’T SLEPT AT ALL! (Do I need to keep saying it!? Sound familiar?)

He spells out the sleep cycles we go through transitioning from one stage to the other and when much of our deep restorative sleep happens (which explains why my fibromyalgia has improved so much since I fixed my sleep…I now realize my changes allowed me to significantly boost my restorative sleep). He also gives guidelines as to how typically long these cycles are and how many are a good number to go through each night.

Winter describes what cues (and exactly how we can affect them!) help set and synchronize our internal clock every day (our circadian rhythms), and how, when they’re out of whack we get unpleasant symptoms like both SLEEPINESS and DIFFICULTY SLEEPING, DIGESTIVE PROBLEMS, REDUCED MOTIVATION, and IMPAIRED CONCENTRATION/MENTAL FOG. (Um…need I say it again?)

I’m hoping you’re starting to get the picture of what a gold mine “THE SLEEP SOLUTION Why Your Sleep is Broken and How to Fix It” clearly is to anyone with a sleep issue. I mean, if you can’t find yourself in these pages, plus something concrete to do about it, well…oh, actually Winter even accounts for that because after helping you figure out what your specific sleep issue is and spelling out the solution, he goes on to point you in the right direction for further follow up.

And as for spelling out those solutions, Winter starts with sleep hygiene where he gives us the foundation needed to fix all sleep problems, those things that we CAN CONTROL, those things that will HELP TO SET OURSELVES UP TO SLEEP SUCCESSFULLY, plus guidelines (and a ton of suggestions!) for an optimal sleep routine. Then, of course, many of us have them, he discusses our habits that work against setting ourselves up to sleep successfully. And while munching in the evening could well be one of those habits, he gives the low-down on how to turn evening munching into a sleep enhancement! Yes!! I’m here for it!

But maybe what I was most intrigued by was Winter’s take on insomnia, explained at length, including the difference between insomnia and sleep deprivation as well as the role of illness and medications. I finally found out what insomnia actually is…truly eye opening and not at all what I expected…but now that I think about it, it explains why I’ve read a comprehensive book by a foremost sleep expert close to twenty-five years ago plus every article about sleep that I’ve come across since then and I still never had any clue what insomnia actually was!

It was almost as intriguing as Winter’s explanation of the role of how we think about our sleep. I had long realized many who think they get good sleep, don’t. But now, to my surprise I find out that many who think they don’t sleep, actually do!

And one of the most fascinating things was the role of our belief about how we sleep and our reaction to it, in how well we function the next day. (It directly explains what I was able to achieve for so many of my years with fibromyalgia.)

And it was a good reminder and reinforcement for me of something I’ve noticed myself relating to my own power with respect to the way I think and how it affects my functioning with the fibromyalgia hand I’ve been dealt. Which reminds me of how intrigued I was to find Winter suggesting a “fake it ’til you make it” strategy for a specific sleep circumstance…he’s arrived at the same tactic that I’ve talked about in a previous post that I do for a specific fibromyalgia circumstance, to help myself to begin to get control of a fibro flare. Interesting!

I was also keenly interested to hear what Winter would say about sleeping pills and he talks at length about them, the why and the what, including a whole slew of sleeping pill options with a good synopsis of each…and the fact that a growing body of evidence is potentially linking some of these pills to memory loss, confusion, or even dementia with prolonged use. He confirmed what has long been my understanding and skepticism about them when he summed it up with “Sedation and sleep are not always the same thing.”

Yet another reason to understand our sleep and learn how to actually solve our underlying issue.

And Winter’s “SINGLE MOST IMPORTANT PIECE OF ADVICE FOR ACHIEVING YOUR BEST SLEEP”? Well, surprisingly, as hard as it can feel to attain good sleep at times, it’s relatively easy to do…within all our power to do!

He then lays out what I think is such an ingenious little sleep schedule exercise (again, that anyone can do) to figure out your own ideal amount of sleep needed, that I truly can’t think there would be anyone at all who’s sleep would not be totally “fixed” after completing this exercise alone!

But when he detailed how to figure out our “sleep efficiency” and guidelines as to what normal sleep efficiency is, here’s where I found a sentence that stopped me in my tracks, having had fibromyalgia for over eighteen years now. “Spending twelve hours in bed to get seven hours of sleep may not leave you feeling sleepy the next day, but it is often going to leave you feeling as if you’d been hit by a train.”

Read that again…”Spending twelve hours in bed to get seven hours of sleep may not leave you feeling sleepy the next day, but it is often GOING TO LEAVE YOU FEELING AS IF YOU’D BEEN HIT BY A TRAIN.”

It’s something so many of us with fibromyalgia can identify with!

And as he related the common fixes that people try when this happens, which he explains only serve to compound the problem…it was exactly what so many of us with fibromyalgia do! It was what I did for so many years when I was stuck in this fragmented sleep pattern until I finally fixed it (which, remember?…incidentally, it gradually led to my chronic fatigue at long last disappearing!).

Which leads me to napping, one of those common fixes…ah…our beloved napping! I would venture to guess most if not all of us with fibromyalgia have had more than our share of naps. I know I have. And I’m also guessing many of us don’t put a lot of thought into the when, where, how long, or even the setting of our naps to ensure they don’t become what Winter describes as “THE BIGGEST MISTAKE PEOPLE MAKE IN TERMS OF THEIR SLEEP”. Again, I know I haven’t. Winter gives us the detailed formula to figure out, optimally, the role napping should play in our lives, how to avoid post-nap funk, and the true purpose it should fulfill for it not to be hindering our night’s sleep…basically for helping us make naps work FOR us instead of against us.

Making naps work FOR us…ahhh, that alone makes reading the book totally worthwhile!!

Yes, we love our naps, but Winter’s book is truly a gold mine in the “complete process for understanding and overhauling our sleep” department.

And included in that, of course, he covers a range of sleep disorders, succinctly, with easy to understand but thorough explanations, including the latest treatments…from Circadian Rhythm Disorders (Shift Work, Delayed Sleep Phase, Advanced Sleep Phase, and Non-Twenty-Four Disorder), Snoring and Sleep Apnea, Restless Legs Syndrome, Narcolepsy, REM Behaviour Disorder, Bruxism/Jaw Clenching (I learned a good tip for working on reducing this) and Parasomnias.

He even gives a complete overview on sleep studies, when it might be advised to get one, what to expect if you go for one (and it does sound easy), how to interpret all the data collected, and guidelines on what to ask of the specialist doing the study. Sleep studies demystified.

Really, Winter’s entire book is…sleep problems demystified.

As for myself, besides giving me a wealth of new and updated knowledge, as well as a few new easy-to-do little tips for triggering sleep that I am excited to be trying, Winter’s book demystified and confirmed what I’d already observed, realized, lived, and fixed…my optimal sleep hours, my fragmented sleep and my limited napping…my morning exercise…my eliminating coffee (I sleep deeper without it) and limiting wine. And I was happy to see my long-time bedtime snack of bananas, plus my more recently added tart cherry juice (I honestly think they both make a difference) on his list of bedtime snack foods that will improve our sleep, plus so many more to choose from.

And by the way, I hadn’t realized when I talked about slowly discovering my “optimal hours” of sleep in an earlier post that I was actually, in a sleep expert’s language, talking about “sleep efficiency”. Incidentally, at the time I wrote that post, I suspected that my optimal sleep (if I could get my schedule right) would be about seven to eight hours a night and I am happy to say I’ve finally mastered a good sleep schedule this past year by limiting my sleep to seven hours (consistently) a night, thus waking feeling rested and restored, leaving me with lots of energy all day, no naps (ever) needed.

And the odd, rare night when I don’t get a good night’s sleep? Well, let’s say it reminds me again that the difference is like night and day for my fibromyalgia between getting a good night’s sleep and a bad one. Night and day.

So I’ve said it before and I’ll say it again…“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.” But I would add that I would tell my fibromyalgia self this at any time over the last seventeen years because it is never too late to fix our sleep. (I thought that ship had sailed, I fully expected I’d have chronic fatigue for life, but here I am.)

And as I continue to put getting good sleep a top priority, I hope I will continue to see the improvements in my fibromyalgia.

Now, am I actually healing my brain; is it going that far? Can the brain heal during sleep?

Well, obviously I can’t know. But I can tell you, after reading this book and hearing what Winter has to say about the wonderful things that are happening in our brains during deep (restorative) sleep, I feel more optimistic than ever! And I noticed Winter was excited to point to a recent study showing even genetic tendencies to develop Alzheimer’s can be influenced by better sleep! And as these improvements continue ever so gradually over the years, it does feel like I’m on the road to recovery.

But maybe what matters even more is that the quality of my day-to-day life has increased one hundred percent!

And it started when I fixed my sleep.

And it snowballed as it went.

And finally…I have energy…I have time to do things…and I have a sense of well being…all the time.

So I wanted to share my good fortune with others with fibromyalgia, with you, and I hope I’ve found the perfect resource for you to be able to do it too. You may find, like my son and I, you may have one or two things within your power to change that are holding you up from finally fixing your sleep. Maybe there’s a critical change waiting for you to try, to discover what will be the breakthrough you need for everything to fall into place. I know I will forever be grateful that I tried.

And maybe it’s more complicated for some with fibromyalgia and the chronic fatigue it brings, but again, as Winter says, “Understanding your sleep and solving any issues you have are the first steps to figuring out the cause of your fatigue.” and I have to think he’s right.

But I can’t say it enough, that once you understand the inner workings of our brains and bodies with respect to sleep and then see the solution laid out in front of you, it always amazes me, how easy it is to pinpoint your specific sleep issue and what you are doing wrong, how much sense these solutions make, how incredibly doable they are and how you just know they will work once you now understand!

This book hits the jackpot on this!

So whether it’s for a starting point or ends up being the entire solution, I highly recommend reading “THE SLEEP SOLUTION Why Your Sleep is Broken and How to Fix It” by W. Chris Winter, MD. He couldn’t have picked a better title…this book truly is a solutions-oriented guide giving all the knowledge you need to discover what is preventing you from sleeping well, then spelling out real, actionable solutions.

Sleep problems demystified…and solved.

I almost think this book should be required reading for everyone, everywhere.

What I know is real is I think there would be a whole lot less people trapped in the vicious circles that can take us further and further down the rabbit hole of more and more messed up sleep and the resulting health issues, if they only truly understood sleep. I know I certainly would have made different choices.

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But the good news is…I learned it’s not too late.

In fact, from what I can tell, I don’t believe it’s ever too late to learn.

Certainly it’s not too late to make changes either.

And it’s not too late to get fixing your sleep!

“You are a good person. And you absolutely can sleep. I’ll help.” – W. Chris Winter, MD

I hear this over and over again with respect to fibromyalgia treatments and every once in awhile I’m told…”different things work for different people”… but I keep wondering…do they? Do they REALLY?

DO different things work for different people? Is that just a blanket statement that applies to fibromyalgia?

Or does it depend on if we’re talking managing symptoms or lasting improvement (possible recovery)? Temporary relief or long-term progress?

I wonder if it depends on what you are trying for.

So let me explain.

First of all, I wonder if people get hung up on the tremendous variety of symptoms as evidenced by this statement about fibromyalgia that I saw not too long ago on social media…”The problem is that fibromyalgia affects so many other things. Symptoms – how many and how much – vary widely from patient to patient.” And then they often make this inference…“So there’s no one therapy or treatment that will benefit the majority.”

Now certainly there’s many many symptoms, so certainly there’s many many things for relief of the many many symptoms. So yes, sure, of course different things work for different people.

For temporary relief of these many symptoms, sure, different things work, there’s probably tons of ways to alleviate pain or fatigue or the various other symptoms…for a period of time…weighted blankets, heating blankets, soaking in a tub, a massage, pain creams, a plethora of meds, CBD, vitamins, natural remedies, etc. etc. And of course these different things work for different people depending on their symptoms, their age, their other conditions, so many factors really, etc. etc. again.

But long-lasting permanent improvement…what about that?

What about long term, solid, here to stay, big picture…progress…yes, improvement(!)…on our overall fibromyalgia? How many ways are there to that!?

Well, I hear people talking all sorts of things under the sun to manage symptoms, but those who are improving over time, some even recovering…I am hearing the same consistent thing coming from them. And it’s the same thing I have discovered, because honestly, at this point with no known cause of fibromyalgia to specifically work on, I wonder if there IS only one approach that puts us on the path of consistent functionality and enduring overall improvement.

I wonder…because it makes sense when I think about it.

Say, for example, fibromyalgia is a “brain thing” which as I’ve said many times before, it has always felt that way to me, right from the start…that my brain is “misfiring” for whatever reason, overactivating pain receptors they say, and sending out wrong signals to my body. It seems to me that this would explain why all of us with fibromyalgia get so many various and ever-changing symptoms that even differ from person to person…if our brains are misfiring and sending wrong signals I doubt there’s going to be much uniformity and consistency involved in that! If something in our brain signals has gone awry, I would think it would be going to be in all sorts of directions, resulting in so many different symptoms across individuals and even within each individual at different times.

And as we start out on our fibromyalgia journey, it’s natural, as we get each symptom or group of symptoms, to try to deal with them as they come, to get relief in the moment. And as time goes on, we can end up going from symptom to symptom, until over the years we are running around chasing treatments for all these different random, often temporary, and generally ever-changing symptoms…for temporary fixes.

And it definitely helps to seek out relief for those all-over-the-board symptoms as they come, make our lives more comfortable, of course…BUT WHAT ABOUT THE UNDERLYING ORIGIN!? What if that is the same for everyone? I mean, SHOULDN’T it be the same underlying origin (and likely some underlying same triggers) for everyone? SHOULDN’T we be treating and tackling THAT?

After all, if there’s a certain origin (which I’m assuming is the same for all of us)…aren’t we all working on the same thing? And wouldn’t working on THAT (and our underlying triggers) be our best shot at lasting improvement and progress? For long term ACTUAL MITIGATION of all these symptoms, long term HEALING-your-body kind of progress, that is…so we don’t get as much of these symptoms in the first place?

So if it’s caused by a “brain thing” as in my example above, and I’ve heard there’s been promising research pointing to this recently, we’re all repairing our brain. Or if it’s caused by a “gut thing”, as I’ve heard there’s been recent promising research on this as well, we’re all repairing our gut. If it’s caused by long term messed up sleep as some say, and personally I wouldn’t rule that one out either, we’re all repairing our sleep. If it’s caused by PTSD as others say, and from what I recently read in the self-help book OVERCOMING Traumatic Stress  that would not surprise me either, we’re all repairing our PTSD. Say it’s caused by some sort of deficiency as some insist, well, we’re all working on that too.

Or maybe, it’s some sort of combination of many of these things…maybe PTSD (or any other of numerous possibilities!) has caused such wrecked sleep over the years, that finally the continual stress of this lack of restorative sleep on our brains/bodies just broke down something in our brains. Honestly, so many of these things are intertwined and the possibilities of other potential causes are countless…who knows what root cause will eventually be found?

But whatever fibromyalgia is caused by, all of us that have fibromyalgia, well, we’re all repairing the same underlying thing.

And without a definitive answer as to exactly what this underlying origin is, I’m now thinking, that my “combat mode“, whereby “I would try doing anything I could do to feel as healthy as possible in every other way” that I undertook over seventeen years ago in an effort to just try to feel good enough to keep functioning in life with my chronic illness was maybe the most sensible thing I could have done.

Sensible because as I’ve worked on my overall health (to simply help me function), by doing things that have improved my body’s basic underlying core health, it’s hit many if not all of these potential underlying origins of fibromyalgia as well. I mean, I’ve been exercising regularly, eating a healthy diet, working on improving my sleep, and working on managing stress…all of these consistently from the start…and forever improving and refining my routines as I make more and more sense of how my fibromyalgia responds.

And I realize now, over seventeen years later, as I do some quick online searches of the health of some of these parts of our bodies where fibromyalgia might potentially originate, it’s no wonder I have been able to not only function over the years, but even improve. When I do these searches, the things I have been doing keep popping up!

When I search “brain health” I find “exercise regularly”, “get plenty of sleep” and “healthy diet” right up there on the lists. When I search “gut health” I find “healthy diet” the predominant recommendation (no surprise there). And obviously a healthy well-rounded diet is going to most likely go a long way towards taking care of any vitamin deficiency should that be the underlying origin of fibromyalgia as some think. When I search “good sleep” I find “exercise regularly”, “healthy diet” and “reduce stress” among the top tips. When I read the self-help book OVERCOMING Traumatic Stress, it was not lost on me that my exercising to boost my serotonin levels over the years to fight depression and manage stress, as well as my efforts to improve my sleep habits, had certainly played a role in helping me to deal with my PTSD.

So yes, I guess it’s not so surprising then that my overall fibromyalgia has been ever so gradually improving over the years. With the absence of a definite known point of origin for our fibromyalgia, maybe the blanket approach of boosting my overall health as much as possible has inadvertently given me the best chance of hitting that origin and rebuilding.

And all those seemingly random fibromyalgia symptoms coming and going… not only have they happened less and less over the years…but by the way, I’ve found if I just keep working on my overall underlying health each time they crop up, they go away. Not right away…as I’ve discussed in previous posts, it takes a bit of time to focus on whatever I’ve slipped up on (usually stress management or sleep) and for it to play out in my body and make them go away, but I AM able to make them go away…without any ongoing medications. And I’m going to talk about this more in my next post and explain why specifically I think that may be.

But really, in the big picture, this is just common sense at the very least…that someone’s quality and functionality of life would increase as they increase their overall healthiness…being more fit, feeding our bodies with healthy foods, getting longer hours of more restful sleep, reducing stress…this is something that would surely benefit anyone…wouldn’t it?

Think about it.

How could getting healthier not make ANYONE feel better to some extent?

I mean, I can’t think that there’s anyone, anywhere, with or without chronic illness, that won’t at a minimum, feel and function better in their day to day life by improving their overall health.

And likewise, surely improving one’s overall health would benefit ANYONE AND EVERYONE WITH FIBROMYALGIA to increase the quality and functionality of their life with fibromyalgia on some level…wouldn’t it?

Because yes, those of us with fibromyalgia are dealing with so much to overcome, of course…but I can definitely attest to the fact that increasing my overall healthiness HAS tipped the scales in favour of increasing my day to day feeling of well-being, helping to minimize the effects of my fibromyalgia on my life. I guess it’s been a process of building up the good, to feel as good as possible and have as much energy as possible…to outweigh the bad (of fibromyalgia) as much as possible. It HAS helped me to function, unquestionably.

So maybe it’s simply increasing our quality of life by tipping those scales…maybe it’s hitting the underlying triggers of symptoms…maybe it’s quite possibly actually healing the very origins of fibromyalgia.…maybe it’s all of the above.

Whichever it is, I can say it unmistakably seems to be working…and the beauty of it is anyone can do it because everyone can find things to work on to improve their health in some way, no matter what state their fibromyalgia symptoms are in‎…because the key word here is IMPROVE.

Yes, EVERYONE can do it. And EVERYONE can feel better from it.

Everyone can find a way to improve their diet and eat healthier. Why, I’ve been focused on eating healthy for decades and I still regularly find new things to add to my diet to benefit my health in some way. And some of these “finds”, usually to my great and unexpected surprise, turn out to be really key things in my battle with fibromyalgia! (like walnuts my go-to brain food…or bananas that seem to help me sleep deeper)

And I dare say everyone can find a way to exercise…I know…the dreaded exercise(!)…I so understand…but hear me out. Many with fibromyalgia tell me they can’t exercise and I’ll be the first to acknowledge that exercising with fibromyalgia is fraught with so many difficulties it took me two posts of over five thousand words combined to discuss it.

But at the same time, I have others with fibromyalgia telling me they find all sorts of ways, against all odds, to get some sort of exercise and movement. Some simply stretch, some walk using walking sticks, some get their movement doing their jobs, their work is their exercise. My favourite is my good fibro friend who dances in her bed to “Fight Song” for exercise when she can’t get out of bed. And whenever my own body stiffens up in pain from sitting inactive for awhile, I often remember how, years ago, I’d seen a close family member who was wheelchair bound from MS having family members move and exercise her body. I now understand why…because her body still needed the movement…so I get my stiff aching body up and I move.

Making exercise (and movement) work can take many different forms for many different people. I started with what I could manage and built up slowly…but one can stay at the same level…whatever works for them. We have to work on finding whatever exercise it is that we can do and that we feel will overall benefit us in some way. Yes the movement definitely benefits me by loosening up my stiff body and combatting pain levels but I still feel the boost in serotonin and endorphins that I get that combat depression and are a huge stress buster (and I’m sure help me sleep better) will always be the reason that above all else compels me to keep climbing on my treadmill and not quitting till the workout’s done.  Sometimes now…I just start…see what happens…see if I can manage…whatever I can do. And I often surprise myself.

Hell, a couple weeks ago when I was in a flare and having trouble just standing one day because of deep core back pain, I wondered if I would be able to do my usual treadmill workout the next morning. But the next morning I was able to straighten up and my body felt secure enough to climb on my treadmill and give it a try. Surprisingly I was able to complete the entire workout, no problem…and then felt better for it all day as it had taken the stiffness out of my body and helped combat my flare!

And sleep…that so-crucial-to-our-health but seemingly elusive thing for those of us with fibromyalgia…well, from my research, I honestly can’t believe there is anyone who can’t work on (and find) ways to improve their sleep. I have been researching and reading about how to sleep well for over twenty-five years. I started by stumbling upon a leading book of a foremost sleep expert almost twenty-five years ago as I searched for answers to sleep issues my son was having. I’ve continued to read every article etc. I’ve come across since then, both for my son and then for myself after I got fibromyalgia. I have found countless ways to continue to improve my sleep over the years and even with all this knowledge I STILL come across new gems every once in awhile that prove to really help.

And I can’t emphasize enough how worth the effort every little gain has been not only for my day to day functioning (I was finally able to largely leave my chronic fatigue behind close to five years ago!) but to my long term healing through attaining restorative sleep.

Yes, all of us can always find ways to improve and when that is our focus, we don’t feel so defeated by roadblocks or setbacks because our mind-set is so much more positive and this new more positive mind-set helps to lessen our depression and stress. Yes, getting my mind off my fibromyalgia and focusing on my healthy life instead has been one of the best things I could have ever done to help manage my stress level‎, a key trigger to manage for mitigating my overall symptoms. I feel proactive and powerful and that’s the way I need to feel to fight my fibromyalgia…I’m owning my health management myself!

These tried and true things to build our health, heal our body, we ALL know these. We can ALL work on them and we can ALL feel better to SOME EXTENT from one or more of these things.

It’s probably why it helped me function and come through a ten-year stint with chronic severe endometriosis decades ago with my life and career intact, in fact, thriving. Maybe it’s why a family member of mine who has MS tells me she consistently does these same things and so far she has been functioning full steam and living symptom free for many years.

Maybe it’s a good approach to function with ANY chronic illness.

That’s all I was trying for, when I started this fibromyalgia journey over seventeen years ago, the goal has always been (and still is) to function the best I can given that I have chronic illness, to mitigate symptoms, to still get to live my life as much as possible, to increase the quality of my life. Anything else is a bonus. Never in a million years did I expect this kind of long lasting solid (possibly permanent) improvement over the years that I’ve ever so gradually experienced. I was just trying to stay afloat, to feel better to whatever degree I could…to offset the bad…with good, as much as possible. I never expected to actually outweigh the bad with the good. But that is exactly what has happened. By far, my (fibromyalgia) life is now far more good.

I guess what I’m trying to say is stay open-minded and have faith in your own personal power and ability to fight. Don’t underestimate the power of these old standard, regular healthy things…to make a real difference…and to heal.

So sure I still take advantage of temporary fixes here and there…I put some pain cream on my back and shoulder this week while I waited for my lifestyle changes to kick in and reduce my symptoms for the longer term…but I never feel like I’m looking for a needle in a haystack of temporary fixes to manage my overall fibromyalgia.

For what I know is real is that I’m ALWAYS consistently working on the underlying factors driving my symptoms and quite possibly the very origins of my fibromyalgia. No, working on being as healthy as I can be does not feel like an aimless shot in the dark. It feels like I am using my own power to take control of my fibromyalgia.

And for those who say, “it doesn’t work for me”, I say, make it work. Look for ways to make it work. I’m a big believer that there’s always a way to do anything in life…we just have to find it. Don’t quit until you do. You just may surprise yourself too.

And maybe next time you hear that phrase, “Everyone is different and different things work for different people”, you’ll wonder too.

If it depends on what you are trying for.

I’m not saying it’s exactly the same…living with fibromyalgia and living with the coronavirus pandemic…of course not, but I can’t help but keep seeing some similarities. And although we wouldn’t wish this on anyone, maybe the world is getting a glimpse into the everyday life of the chronic illness world, or in my case, the fibromyalgia world.

And maybe our fibromyalgia doesn’t make us weaker as we face this, as we initially fear when something like this comes along…maybe it makes us stronger.

Yes. Stronger.

So let me explain.

Stronger because we know how to fight. And fight. And FIGHT some more.

We’ve been doing it for what feels like forever already.

Yes, the coronavirus pandemic is ushering in a new wave of existence for the world right now, and I’ve had my world rocked as much as anyone, but in the midst of all this, the thought keeps coming back to me…some elements of this pandemic life, I’m not entirely unfamiliar with…thanks or no thanks, to my fibromyalgia.

So YOU tell me…can you tell which one I’m talking about? Coronavirus pandemic? Or fibromyalgia?

Our world gets smaller…isolated…social ties drop off. Our home becomes more and more our world. (I’ve actually been social distancing for years now and by a lot more than six feet!)

Fearful of what our symptoms mean…and what they are leading to…what serious condition we may or may not have…trying not to imagine the worst.

On top of battling the physical (we get flu-like symptoms regularly and so much more!)…we’re battling the mental side of it as well….and oh, are we ever!

Because we’re battling the invisible.

We’re battling the uncertainty of what is coming, from one day to the next, and the unknown of how much of our day to day life will be taken over…and taken from us. We fight helplessness and hopelessness. Depression is beckoning us.

Yes, we have to be mentally strong, more than ever, to keep pushing through this and do what we must do in life…carrying out our responsibilities while we fight for our health…possibly our very existence.

And anytime, if we slip up, we could be battling an incapacitating flare up of symptoms which could range from mild and annoying to severe and incapacitating, taking weeks or months to recover from…we worry we won’t recover at all.

All this while the ever-present anxiety of if we will be able to continue working (in some form) hangs over us; like everyone, we still need money to survive.

Yes, we’re in for a long battle, maybe the battle of our life, with no clear end in site. Yet we need to keep up our fighting routines …we need resilience…and vigilance.

We need unrelentless…fighting!!

So yeah…I know you know the answer. Coronavirus pandemic…fibromyalgia… not the same, but not so different either…some unmistakable similarities for those living through them…for those fighting them.

And I really wouldn’t call it a positive necessarily, but I’m kind of used to this kind of fighting. No, I’d call it a STRENGTH. I KNOW HOW TO DO THIS. Right now, during this pandemic, I’m fighting like I always fight, like I’ve been fighting for going on eighteen years (of fibromyalgia) already…fighting to prevent the worst from coming.

And I’m doing it the same as always…I’m working on what I CAN control.

I’m working on being as healthy as I can to build my body up as much as I possibly can to be able to fight illness, aka my “combat mode”. Only now, there’s a dual purpose to my efforts. Besides continuing to build up my health to fight fibromyalgia, at the same time, and with the same tools, I’m also building my health up and getting my body ready to battle the coronavirus if I need to.

I guess I’m strengthening my immune system as much as I possibly can. And when I do a quick online search of “boosting immunity”…go figure, I find lists that include the things I’ve already been diligently working on for almost eighteen years now to fight fibromyalgia(!)…things like getting adequate sleep, eating healthy, exercising regularly and minimizing stress.

And I’m happy to see those things on the lists, because those are the things I’ve already been doubling down on to get my (fibromyalgia) self as ready as possible to battle coronavirus (not really too different from how I double down on them when I’m battling a fibromyalgia flare). I’m hoping to be in the best place I can be with my fibromyalgia, in case I end up fighting coronavirus as well.

So, first and foremost, I’m working hard to get my optimal sleep EVERY night…I’m doing ALL of my routines, that I’ve learned over the years, will usually help me to get decent sleep…and allowing myself absolutely none of my usual occasional slacking off. There are just so many, many, MANY well known benefits, both physical and mental, to getting good sleep and I need ALL of those benefits right now!

And speaking of mental benefits, I need to draw on everything in me to keep my mental health afloat right now. I mean, we’re in a pandemic! We’re ALL, everyone in the entire world, working on keeping our mental health afloat right now! And I know all too well, when my mental health declines, my stress level rises…and then my symptoms flare up…like clockwork, I know from experience, that’s just how it goes. Then if the flare symptoms resemble coronavirus symptoms (as they often do), well, then I’ve got another whole problem on my hands, trying to figure out what I’m actually dealing with before I can even begin to know what to do to treat it (I know YOU know the drill!).

And I won’t pretend I don’t wake many mornings with my stomach quickly tying in knots as the stark realization of the coronavirus pandemic reality we find ourselves flailing around in, floods back into my memory to form my first thoughts of the day.

So I’m digging deep for all the willpower I can dredge up and I’m MAKING myself maintain my regular routines, especially my workouts. They’ve invariably been my biggest mental health aid/stressbuster since long before I had fibromyalgia. That is the first and foremost reason I’ve always done them, to boost my serotonin level to keep depression at bay. Without exception I know that, when they’re the last thing I FEEL like doing, they’re the first thing I SHOULD be doing…and that has never been truer than right now!

But wow! This coronavirus pandemic tests all my abilities to handle stress and anxiety, to their max. So again, I’m applying the same thing that I’ve applied to living with fibromyalgia all these years. I’m working on what I CAN control…I’m latching onto whatever I can find or do, to help me feel a little more in control…a little less hopeless…and hence, a little more positive.

So I’m pulling out all stops, doing all the tricks I’ve learned over the years to help minimize stress and fight off depression. Besides keeping up my workouts to boost my serotonin level…I’m reading my little powerhouse stressbuster book every night to give myself a much needed escape and help me to go to sleep on a positive note…plus I’m using the breathing techniques I just learned in the “OVERCOMING Traumatic Stress” book whenever I feel overwhelmed by the news of the day.

Sometimes I simply have what I consider a “mental health day” as I talked about in a previous post, whereby I just do some sort of change-up from the norm of everything I HAVE to do, something I enjoy, for a much needed break, a lift in my spirits…stress relief really.

I’m doing ANYTHING and EVERYTHING I can think of to keep my stress level in check, THE main trigger (along with poor sleep) for all my fibromyalgia symptoms. I don’t want to go through this pandemic wrecked from stress and anxiety, so as not to trigger my fibromyalgia into an extensive flare and end up feeling weakened by that going into battling the coronavirus should I get it…plus, well, being stressed and anxiety ridden just sucks! Period.

And speaking of being overwhelmed by the news of the day, one key thing I’m being mindful of to help guard my mental health, is that I’m being careful of what exactly I watch of the news coverage that’s out there . The ever changing, rapid, tragic news cycle of the coronavirus pandemic is everywhere…it’s being put in front of us 24/7 on all mediums…it’s hard not to miss it…but that’s exactly what I do. I make a concentrated effort to miss it, to turn it off, turn away, sometimes not turn it on in the first place, to prevent myself becoming engulfed by the uncontrollable hopelessness and despair that any of us could so easily sink into.

Oh, I watch enough to keep informed and yes, I can’t help but see the tragedies unfolding around the world, but I won’t and don’t, let that be everything. I look for the positive…I NEED the positive to stay afloat…and I know from experience, EVEN TRAGEDY HAS POSITIVES EMERGING FROM IT.

The positive stories…the stories of goodness and empathy and helping one another and reaching out, as we support one another in this time of crisis…the stories of triumph. I latch onto all of those whenever I can and I fill my mind with them, instead of the despair.

And then, there’s my own personal positive (and I’m guessing you’ll know what I’m talking about), although I would never have chosen for it to have happened this way. No one is bothering me to go anywhere, to do anything. THE WORLD HAS SLOWED DOWN TO MY (FIBROMYALGIA) PACE. And it’s a welcome relief, in a way, to finally get a lot closer to that “time-out from life” my fibromyalgia body has craved for almost eighteen years now.

For awhile, I plan to…just breathe.

And then there are the positives I am most intrigued about, for myself on a personal level and for the world as a whole. In the past, I’ve noticed that when a crisis situation happens, I have been forced to do things that I wouldn’t have otherwise done, and sometimes…I end up LIKING the new routines or the changes they lead to and I discover a way of living altogether different than I had been doing…and it’s BETTER, so I keep up the routine AFTER the crisis. And I absolutely love when this happens. I’ve had some of the most life changing opportunities and improvements to my life emerge out of crises.

Which leads me to my next thoughts. With this is mind, I’ve even started thinking of how I can USE this crisis to MAKE some positive changes for myself.

I mean, if we HAVE to go through this…I look for silver linings…I look to MAKE my own silver linings…for myself…in my own little world here…that can benefit my life in some positive way. Really, why CAN’T I use this time when routines are changed, as an opportunity to motivate myself to jumpstart some routine changes for myself and change mine for the better!? Why CAN’T I change how I think about it ( and help lessen the  stress!) by reframing how I think about it as an opportunity to get some things done, make some changes? (I can…and I will!)

Like everyone, I have my bad habits that I’d like to change. For one, I’ve come a long way already but I always look for ways to improve on my sleep (don’t we all!)…I’ve wondered for a long time what benefits I would notice if I was able to master being more consistent on my waking and going to bed times. Accomplishing this has been that one recommendation by sleep experts that has still managed to elude me. But I’m intrigued by it because experience has taught me that one change often leads to multiple benefits, some of which are totally unexpected bonus improvements…and experience has also shown me that this always seems to apply times-ten for sleep improvements! (Why, as I wrote about in a previous post, one major sleep change accomplishment that I worked diligently on years ago, to my great astonishment, eventually led to my chronic fatigue being largely gone!)

Interesting, now that I think about it, that the main personal thing I’d like to tackle during this coronavirus pandemic will hugely benefit my fibromyalgia fight. Sure, I’m hoping I can tackle a few of those home improvement projects (who doesn’t?) that I would love to complete but I never seem to be able to get to and also fit in some motivational reading (that always lifts my spirits)…anything that makes me feel accomplished and positive during this time we are going through.

But the main improvement I’d like to do will help me fight fibromyalgia…because that’s what we do, those of us with fibromyalgia…we fight it…and we fight it…and then we FIGHT it some more.

We fight for our health, and we fight for our life. We fight to keep the life we have, and we fight to have a chance at the future we want.

I don’t know, maybe the fighting has just been ingrained in me since my first stint with chronic illness all those years ago, endometriosis. I’ve long since realized that my experience with fighting endometriosis set me up to start out my battle with fibromyalgia on a good footing right from the start (although I didn’t realize it for a long time, I felt as messed up and at a loss as anyone at the start). And I’ve often wondered if maybe fibromyalgia has been setting me up, preparing me, for the next, even greater fight (although I’d be fine with just staying put where I’m at, thank you!).

What I know is real is I will always be fighting, one way or another. I won’t be going down without a fight. That was decided the minute I set out on this fighting chronic illness journey many years ago, for I became a chronic illness warrior then!

No, I wouldn’t pick any of these battles, but if they pick me, I will fight them.

So, fibromyalgia…coronavirus pandemic…we know how to do this…we got this!

We WILL overcome.

For we were already warriors.

So for some time now I’ve noticed a fair amount of individuals with fibromyalgia indicate that they also have Post-Traumatic Stress Disorder (PTSD).

And I’ve noticed a fair amount of other individuals with fibromyalgia talking about traumatic life experiences they’ve had that lead me to wonder if they too have PTSD.

I always silently empathize with all of them…I believe I’ve had some experience with it myself.

And I wanted to share a resource I’ve found that, honestly, has given me a totally RENEWED PERSPECTIVE, some INCREDIBLE INSIGHT and DEPTH to my understanding of traumatic stress and some NEW TOOLS I am excited to be trying. And above all, the message that came through loud and clear to me as I read this book is…

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I’m not alone.

What I’m experiencing is normal for the circumstances that happened to me.

It’s not my fault.

But there IS something I can do about it.

So let me explain.

The book is “OVERCOMING Traumatic Stress   2^nd Edition   A self-help guide using cognitive behavioral techniques” by Claudia Herbert.

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And because I initially read the first edition a few years back and still find it to be an excellent option for those who would like a bit less extensive (and less reading), but still comprehensive guide on overcoming traumatic stress, I’m including a link to it as well…“OVERCOMING TRAUMATIC STRESS   A self-help guide using Cognitive Behavioral Techniques” by Claudia Herbert and Ann Wetmore.

Although it’s a self-help guide, I never felt on my own while reading it. It has a calm and reassuring, concerned and kind, almost conversational way about it as it clearly describes the range of reactions, thoughts and feelings that someone in the grip of trauma (and those close to them) may be experiencing.

The book’s aim is to help those in the grip of trauma MAKE SENSE of their situation by UNDERSTANDING WHY their reactions are happening under their circumstances (through NO FAULT of their own!). Then it gently guides them to find the confidence and courage WITHIN THEMSELVES to start or continue their journey to MANAGE their traumatic stress, to RECONNECT to their strength again and finally, to TAKE CONTROL of their recovery process.

I would like to highlight a CAUTION from the author right up front here. She states that if you have suffered long-standing, repeated or complex trauma, especially if this occurred early in your life, such as childhood abuse or enduring domestic violence, and cannot remember a time in your life when it ever felt safe, you will need more specialist help and this book is likely to be of limited use although some parts of it could still be helpful. The Foreword in the book goes a little further, stating that if you are suffering from early-life abuse, complex post-traumatic disorder, this book may make you feel more alone if you do not find you are benefiting from what you read here.

I did find that the author gave thoughtful guidance throughout the book on what to do if you feel triggered at any time as you go through the book. And on that note, I sincerely hope that I have not written anything in this book share post that will be triggering for anyone.

So although some techniques in the book may make a considerable amount of difference right away, the author stresses that it’s not a “quick fix”…the book aims for SOLID, LASTING IMPROVEMENT. It aims to help us to change our emotional reactions by examining the underlying causes, the thoughts and beliefs related to them, and by trying out NEW WAYS OF LOOKING AT THINGS.

It helps one to DEVELOP STRATEGIES to tackle it at their OWN PACE without feeling “wiped out” and experience setbacks to their recovery.

And personally, I’m a huge fan of self-help anything…I love it that I can get going right away, I don’t have to wait for or depend on anyone else…I feel a sense of power in self-sufficiency. And this book does not disappoint in helping with that self-sufficiency…throughout, it gives practical ways and exercises that we can start on immediately, to overcome the effects of traumatic stresses that infiltrate so very many areas of our lives.

Although the author is quick to stress that the book is not intended as a replacement for therapy (in fact, at times, in specific circumstances, she specifically encourages and guides readers on how and when to seek out specialist help), she says that even though there are effective treatments developed, apparently there are many gaps in the system and not everyone has access, nor can afford them or simply feel comfortable coming forward for help…hence the self-help guide.

So maybe this self-help manual is a supplement to therapy, maybe it’s a stop gap, maybe it helps someone who has been affected by trauma to figure out whether they might benefit from professional help…maybe it proves sufficient for someone to overcome their traumatic stress or other stress-related problems without professional help.

Maybe it’s a lifeline to recovery and a better future.

I personally recently recommended the book to someone I know who had been through a therapy program and felt that they were at the point of owning their recovery more themselves. As they completed their therapy program, they welcomed this additional resource and the wisdom, support and additional exercises demonstrated in this book to help guide them to continue to heal and regain their functional life.

Speaking of regaining our functional life, this brings me back to thoughts of fibromyalgia and back to my initial observation about fibromyalgia and PTSD…obviously, as I’m not an expert in either, this is simply my own anecdotal observation…that I’ve noticed a fair amount of individuals with fibromyalgia also have issues with traumatic stress.

I’m definitely not saying I think PTSD causes fibromyalgia‎; that’s not for me to say. (Although after gaining so much more insight about the effects of traumatic stress from these books, I have to say I do see a lot of parallels.) And I myself, although I believe I have experience with PTSD, can think of at least a few other potential causes for my fibromyalgia.

And having a bit of marketing research in my background, I know all too well anecdotal evidence is not a statistical correlation and even correlations are simply that, not evidence of a causal relationship…correlation does not imply causation. So even if there was a correlation or connection found between fibromyalgia and PTSD, that doesn’t necessarily mean PTSD causes fibromyalgia.

For example, what if PTSD causes chronic disrupted sleep in someone and their disrupted sleep over an extended period causes an eventual breakdown in their system or brain which in turn causes fibromyalgia? But…many other things could also cause chronic disrupted sleep and (in this example scenario) hence lead to fibromyalgia. In fact, I had experienced years of chronic disrupted sleep when I got fibromyalgia, and it had absolutely nothing to do with PTSD. See what I mean? Obviously, it’s much more complicated and so many more variables (and potential causes) to consider, far more than my simple example, but you get my point.

In my mind, at this point (and this is purely a personal feeling), if there is some sort of causal relationship, I’m not sure it matters to me…what is significant to me NOW is that Post-Traumatic Stress Disorder, by its very name, is a STRESS…and as I’ve talked at length about in a previous post, stress, ANY stress, is a leading (arguably “the” leading, along with poor sleep) trigger for most if not all of my symptoms.

If there’s something that’s causing me stress, I have to deal with it. Period.

In my own case, I’ve not ever been officially diagnosed with PTSD by a professional; I’ve never spoken to one. And I won’t pretend I have severe PTSD or that I know what others who have intrusive memories and flashbacks and insomnia experience…I don’t.

However, I did realize I likely had some degree of PTSD about twenty-five years ago and I believe it started with an accident close to fifteen years before that. Although I had shrugged it off and said I was fine when it happened, before too long I knew the accident had affected me (forty years later, it still remains the single most impactful thing to happen to me in my entire life, for so many reasons, good and bad). For some years initially, it affected me for the worse but then I was able to reframe it for myself and use it as an agent of change for the better for many more years.

But when I chance happened upon an article about PTSD about fifteen years after the accident, I immediately recognized myself in it. It explained some things…it explained a lot. With this new knowledge I was able to reframe the way I thought about it once more and reclaim some sense of control that (I then realized) it had taken from me…this helped so much that I thought maybe I had largely put it behind me…maybe.

Fast forward many years to maybe about five years ago (my fibromyalgia life now); I was on my way home from a brief holiday and I suddenly realized I’d had absolutely no fibromyalgia symptoms the four days I’d been away! I was earnestly wondering why that was. At that time I didn’t have as full of an understanding as I now have of what triggers my symptoms…initially I pondered some superficial sort of things…changes in foods I’d eaten, changes in the weather, changes in activities….etc. etc.

But as we got on the road to drive those seven hours home, I also noticed that I felt completely and wonderfully relieved…free…I felt totally stress free. And then I realized THAT was more likely the reason my symptoms had subsided. And I had this wistful hope that I wish I could keep that wonderful free feeling going back to my everyday life…but I didn’t know if I could…because in that moment I realized that in my everyday life, I lived with a thin layer of stress just under the surface ALL THE TIME, in that it had become my normal, so much so that I hadn’t even realized it was there!

What WAS that CONSTANT, IMPERCEPTIBLE, THIN LAYER OF STRESS that had become such a part of me that I wasn’t even aware of it!?

My thoughts went to PTSD…‎could it still be more of a thing with me than I had realized? All these years later? Or maybe my two chronic illnesses (endometriosis and fibromyalgia), and this may be more likely, somewhere over the years, had picked up the (stress) mantle.

I wasn’t really sure but I realized then that if I was going to continue to progress and‎ continue to improve my fibromyalgia and move my recovery to the next level, I needed to address this stress. I had done so much already, and I sensed that this may be a key thing that I needed to do that I hadn’t addressed yet.

And I knew immediately where I would start.

I had previously found one of the books in the OVERCOMING series to be a game-changer for me, and I remembered I had seen a PTSD one on their list…it was a no brainer for me to read it…I would read it and see if I thought I had any unfinished work to do on my PTSD and if so, hopefully find something helpful to move me past this hurdle for my fibromyalgia.

That was the first edition I read at that time and I gained a lot of helpful insight which was truly enlightening for me but unfortunately (for me) I put the book aside and did not fully take advantage of everything it offered at the time. So recently, more determined than ever to keep moving forward on my fibromyalgia journey, I decided to revisit it and I was delighted to find this second more extensive edition.

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Upon starting to read it, I could tell immediately that it was going to be easy to read, super interesting and extremely relatable ( in my mind, a self-help book is not much help if it is too boring or too complicated or both to even read!). And as I read through it, I found myself relieved to find that how I had felt…past and present…explained here in black and white, crystal clear…was for good reason.

What I had been experiencing, feeling…was “normal” for what I’d been through (and here was some help!).

Within the first couple pages, I was immediately struck with the relatability of the book as it delved right into a personal account by a survivor of trauma of her firsthand experience. These personal accounts were sprinkled throughout the book revealing so many aspects of traumatic stress in a way only another with traumatic stress could fully identify with…their inner feelings, intrusive recollections, sleep disturbances, avoidance behaviour, emotional numbing reactions, depression, decreased self-esteem, issues with interpersonal relationships, closeness and intimacy, sense of trust and safety, internal deadness…and finally, one personal account that I felt covered it all, ”A REAL BLACK CLOUD COMPLETELY GRIPS HOLD OF ME.”

And although I have not experienced these myself, I was fascinated by the way the book laid out techniques to learn to control (rather than letting them control you) what the author assured us are very common, flashbacks and intrusive memories and panic attacks…”your bodies way of trying to make sense of your experiences”…”the more you allow yourself to get to know them and understand them, the more you will be able to master them and feel in control.”

I was more than thrilled to see the book address improving our sleep…crucial for fibromyalgia! (I never realized that, with techniques and especially practice, we can assert some control over our dreams!)

And the fact that poor concentration, difficulties focusing and memory problems are linked to the system overload that many people experience after trauma, with many strategies in the book likely to help on this front (YES!…another fibro fog fighting tool!)…well, that was eye opening too!

And while the book explains our reactions to traumatic stress, it goes a step further and tells you what to ask yourself to help figure them out! It aims to help us to develop strategies so that we can deal with our reactions without feeling “wiped out” and experiencing setbacks to recovery…it includes numerous anger management techniques, panic attack strategies, ways to manage emotional numbness, as well as mindfulness exercises (in the second edition).

The book goes on to discuss substance dependencies, dealing with guilt, self-blame, self-respect, grief, loss, emotional pain…and yes, HELP TO LIVE WITH CHRONIC PAIN(!)…controlling and managing it to not allow it to take over your life!

I was grateful that the book devoted some time to address family and friends to aid them to understand and help their loved ones in the grip of traumatic stress, while also giving advice to help find the right type of therapy, should that be the route one wishes to go, advising that the suggestions and exercises in this book could still be used with the therapist.

So yes, I’ve recognized a lot of myself as I’ve read through the book…much past…some present. There was so much I could identify with from my past…and explained here in the book.

There was a time many years ago when I had wondered why I didn’t seem to see the future…the future was like a vacant black hole for me…I found an explanation here.

And I knew, a long time ago, that my traumatic incident had changed me…undoubtedly and markedly initially…it changed the way I think, it undermined my sense of security and control. For a time, it was like my traumatic event happened, and in the back of my mind, almost but not quite unnoticeable to me, I was waiting for the other shoe to drop…for years. I found it validating and even a bit cathartic to see it here, in black and white.

And I felt victorious…to see what I had survived…and overcome.

It had been the first time in my life when they couldn’t totally “put Humpty Dumpty together again”…at least not in the exact same way I had been before…at a young age, this was very “real” for me…it tore away my “invincibility cloak”.

And all those years ago, the thing that still stands out to me as the most disappointing about my traumatic incident was the “blame the victim” mentality I received from some afterward. It was my first exposure to this mentality and at a young age, it had an indelible impact on me…it was not at all what I had expected of my fellow humans…not even close. Although I came to terms with that long ago, I was thrilled to see this particular aspect of traumatic stress recognized and discussed in the book. It’s something that NEEDS to be recognized and discussed…everywhere!

And personally, I always find recognizing and having these revelations about my thought patterns is life changing for me all on its own.

I was amazed to have these revelations as I read…I found it so enlightening to see my reactions and exact thought patterns and behaviour over the years explained…and interesting(!)…and a bit of a relief.

I had not even been aware of the underlying thought processes that had just become such a part of me that they were sustaining the condition.

Yes, becoming aware is always at least half the battle for me…then I can begin fitting the pieces of the puzzle together…start unlocking and revealing the answers. And as the book explains, understanding our reactions to trauma helps to make them less frightening while also helping us to realize we are not alone with our trauma experience. When you consider the vast amount of life experiences that could happen to anyone and could lead to traumatic stress…no, we certainly are not alone!!

And one thing I particularly appreciated about the book is that it VALIDATED the traumatization for me. There had been so many elements to my traumatization, spread out over time…some I clearly knew, others I had known were things I had felt for some time, but I never actually distinguished them as traumatizing effects…it was amazing to discover.

So in reading the book, while it affirmed for me that I had indeed have overcome much of my traumatic stress, it also made me realize I still had a few remnants of my behavior hanging around that could be attributed to my traumatic stress that I had never realized before. Like…when I read that we may feel a sense of danger everywhere, so therefore we are “checking what others have done to make sure they have done it properly”…um, yeah, I’m sure my family can attest that I may be inclined to do that at times in situations that involve safety.

And that whisper thin layer of stress that seems to be just under the surface ALL THE TIME…that underlying “edge” that I had noticed on the trip home that had become such an ingrained part of me that I wasn’t even aware of it? Early on in the book I found that…”This FEELING OF BEING ON “RED” ALERT – assessing potential danger all the time – can be extremely draining as your senses have to work overtime to achieve this high level of security.”…bang…nailed it…that’s sure sounds like it could be the underlying ever-present strain that I finally became aware of.

A few other explanations have occurred to me as I read further into the book, one even being the constant strain of having to get up day after day for over a decade and a half and push through life with fibromyalgia to raise my kids, never fully confident in my ability to physically cope with whatever more might be piled on my chronic fatigued life.

Which brings me to another point the author makes, that without a professional diagnosis, we can’t be sure we have PTSD, that there are a number of other similar trauma or stressor-related disorders, such as Adjustment Disorder which lists a continuous persistent painful illness as a potential cause…hmm, sounds familiar.

Regardless of which it is, at this point for myself, I was happy to realize that this next surprising revelation and exciting technique I found in the book would help just the same!

So for awhile now, I’ll be going about my life and I’ll suddenly notice my breathing…or lack thereof. I’ve noticed what seems to be my regular way of breathing lately…shallow…until I catch myself doing it and then need to take a deep breathe to try to correct it…and when I take a nice deep breathe to correct it I notice an immediate difference in my entire persona…an immediate calming grounded feeling…so I’ve been trying to notice and correct my breathing because, well, it feels so serene and peaceful when I do.

So I was both surprised and thrilled to find this shallow breathing addressed in the book. Apparently shallow breathing is what we do when we are anxious or stressed…go figure! (I HAVE found myself dealing with some overly stressful work for some time now.)

And I was even more delighted to find tools to deal with it! I learned that even when I was correcting my breathing, I was doing it wrong. I am excited to now know how to breathe deeper from the technique described in the book AND very excited to be taking it one step further with additional breathing techniques described in the book that help one get grounded, lessen tension (stress!) and promote deeper sleep (YES!…key for my fibromyalgia) or generally, to help one relax and regain control when they have been over reacting.

Although it is going to take a little practice for this way of breathing to become a habit, I notice a far more pronounced positive difference when I make a conscious effort to breathe properly since I have the right tools now. This has been a nice bonus from the book… a way to combat stress and feel super calm in the face of every day stresses that would usually flare up symptoms…and I wasn’t even aware of the extent that I needed it!

So yes, I feel compelled to pass on “OVERCOMING Traumatic Stress  2^nd Edition  A self-help guide using cognitive behavioral techniques” (both editions) to others with fibromyalgia who feel they have been affected by trauma and are looking for help to move along in their journey of healing and hopefully, finally, overcoming traumatic stress.

It has definitely been eye opening and “life-changing” for me.

I never know when I’ll find a real catalyst for change for anything in life but what I know is real is that the only surefire way of not finding one is to not look.

So I’m thrilled that I looked up “OVERCOMING Traumatic Stress…”…the amazing insight and incredible depth I’ve gained about the after-effects of the most impactful incident to ever happen in my life has been enlightening…and cathartic.  And the new information (in the second edition) about my fibromyalgia itself possibly causing a similar stressor-related disorder, an Adjustment Disorder, definitely adds some new perspective to help with my continuous quest to keep improving my (fibromyalgia) life.

And I am now armed with some new breathing techniques! I’m going to start with these, the book says take it slow. I’ll see where I get with these and then maybe revisit some of the other techniques in the book.

Often I find one change can have a bonus effect of leading to other unexpected changes and benefits. So I’m optimistic and looking forward to new positive change!

CLICK BOOK TO BUY

Because…I’m not alone.

What I’m experiencing is normal for the circumstances that happened to me.

It’s not my fault.

But there IS something I can do about it.

“It is important to believe that things can get better…it is possible to contain your reactions and claim back much of your functional life…learning to see beyond the trauma or around it.” – Claudia Herbert