"I often remember how, years ago, I’d seen a close family member who was wheelchair bound from MS having family members move & exercise her body. I now understand why…because her body still needed the movement…so I get my stiff aching body up & I move."

"It feels callous, and it feels like my #fibromyalgia is not being taken seriously…I am usually looking for something more than being told, essentially, to have a little willpower, from my doctor!" #WhatIKnowIsReal

#Fibromyalgia "tries to make me feel I am at its unrelenting mercy, a victim of its every whim...that I just have to helplessly react, constantly adjust my life to its random & ever-changing barrage of symptoms & utter exhaustion...like I have no control."

"I find #hope somewhere…ANYWHERE. Personally…I HAVE TO HAVE HOPE! I always want to have hope. I strive for it, every minute of every day." #WhatIKnowIsReal

"Fibromyalgia lends itself to vicious circle after vicious circle; it often feels like there’s no rhyme or reason to any of it…”doing the opposite” has helped me to break those vicious circles and...to even avoid getting into them in the first place."

“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…” #WhatIKnowIsReal

"At some point I ended up with some definite thoughts on what things I thought were key things I should be trying to do to have the best quality of life I could have (with #fibromyalgia)." #WhatIKnowIsReal

“Try to be positive...is both RIDICULOUS advice and GREAT advice, all at once." #Fibromyalgia #WhatIKnowIsReal

"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." #WhatIKnowIsReal

"...when I started out on this path, like everyone with #fibromyalgia I would imagine, I was just trying to be able to function in my every day busy life, to keep my head above water when I felt like I was drowning in the vicious circles of fibromyalgia."

"…have I overdone it…lost control…pushed too far…can I “get back”? This is my #fibromyalgia…at it’s worst…the “flare up” that everyone dreads…a really bad flare up." #WhatIKnowIsReal

"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.”" #WhatIKnowIsReal

Well? @soisfibroreal.bsky.social @pamelaff.bsky.social @bluedotspecialfl.bsky.social @crankyoldcrackpot.bsky.social @chrisdownunder.bsky.social @metalmofo666.bsky.social @nicholehiltz.bsky.social @misskitty.art @justinjest.bsky.social @cappleroxy.newgrounds.com @crabbyhuskylady.bsky.social

🎸 @soisfibroreal.bsky.social @isabelsoisson.bsky.social @metalmofo666.bsky.social @sahara-stevens.bsky.social @nicholehiltz.bsky.social @hippie-kay-yay.bsky.social @misskitty.art @missjoy1965.bsky.social @chrisdownunder.bsky.social @kaplanikids.bsky.social @bluesnowflake.bsky.social

"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." #Fibromyalgia #Flare #WhatIKnowIsReal

"I pace myself…& I do listen to my body & heed the signals it is sending me…but I push it too. & I PUSH IT A LOT. After 15 years of trial & error living with fibromyalgia, I’ve found my fibromyalgia has some “give” to it & I take full advantage of it."

"Most nights I would be so exhausted, I would need to go through maybe a couple #sleep cycles on the couch, often around three hours, just to be able to get up and go to my own bed." #Fibromyalgia #WhatIKnowIsReal

#ChronicFatigue "For many of the fifteen years I’ve lived with #fibromyalgia, especially the early years, this tiredness wasn’t alleviated by any amount of sleep and rest…not any amount I was able to get anyways." #WhatIKnowIsReal

"I realized with every photo I looked back on from the past 20 years, with each memory that flooded back, part of each memory was a #fibromyalgia memory...when I look at the photo, PART OF THE MEMORY IS HOW I WAS EXPERIENCING MY FIBROMYALGIA THAT DAY."

#Fibromyalgia "...like the athlete running the marathon, my mental game, my incredibly strong mind, IS getting me somewhere. And I won’t be quitting." #WhatIKnowIsReal

"You know how you occasionally hear it reported..some celebrity who suffers from exhaustion goes to some facility to rest & relax & rehabilitate their body for about a month or two? Well I remember thinking, that's exactly what it felt like I needed to do"

#Triggers "I know them well. & I‘ve learned to live in a way to avoid them as much as possible & 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."

"If I am controlling my #fibromyalgia symptoms through my own lifestyle choices, it can’t be taken away from me." #WhatIKnowIsReal

"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." #WhatIKnowIsReal

"It seems so simple...it SHOULD be simple...your body hurts, hmm, what do you do? I have #fibromyalgia…I work on #stress.” #WhatIKnowIsReal

"Yes, after over fifteen years of living with #fibromyalgia and no matter how many times a “bad” #flare up happens to me, I get jarringly worried at first…upset and unnerved as seriously scary symptoms set in." #WhatIKnowIsReal

"I pace myself…& I do listen to my body & heed the signals it is sending me…but I push it too. & I PUSH IT A LOT. After 15 years of trial & error living with fibromyalgia, I’ve found my fibromyalgia has some “give” to it & I take full advantage of it."

"Throughout my whole adult life, pretty much, working out has been my medication of choice. I haven’t needed to read the literature on it, nor look up the science behind it…I can just tell what it does for me.” #Depression #WhatIKnowIsReal

"In fact, having #fibromyalgia and having SOMEONE ELSE tell ME to be positive would pretty much elicit the exact opposite...I’m pretty sure I’d be far from positive in my response to them!" #WhatIKnowIsReal

.

"And yes, #fibromyalgia certainly likes to (try to) keep slapping us back down again and “keep us in our place” when we step off our fibromyalgia “tightrope”…but we can’t let that place be nonexistent." #WhatIKnowIsReal

"For all of us with #fibromyalgia, it seems to me that it’s all about doing or thinking whatever it takes to get up and get doing the things we have to do in life and hopefully, before our energy runs out each day…getting to some things we like to do."

"I just couldn’t do what I used to do with such limited available “good” time and energy each day…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."

#Fibromyalgia "…at a minimum, just feeling that I’m doing something that may make a difference, that I can exert some influence & control for myself…or that someone else is helping, perhaps my doctor…that help is on the way…always lowers my stress."

#FibroFatigue .."It felt like such a deep & complete exhaustion had come over me that ONLY two or even three months of totally unplugging from everything in my life & just getting a time-out from life somewhere to simply sleep, deeply, would do the trick."

"If I am controlling my #fibromyalgia symptoms through my own lifestyle choices, it can’t be taken away from me." #WhatIKnowIsReal

"When aches start to set in and my body gets stiff…I move more. The achier and stiffer I get, the more I move. Yes, experience (of living with #fibromyalgia for over seventeen years now) has taught me to be very conscious of moving in my everyday life."

"Yes, if it’s not #competence…to have the ability to keep getting up…and dragging myself through pretty much everything…day after day, year after year, even decade after decade…while walking this #fibromyalgia tightrope wire...I don’t know what it is.”

"...alongside every memory for the last 20 years...there is a #fibromyalgia memory for me. A quiet memory that I mostly keep to myself, almost like a dual life I lead I guess. Always there, an intricate part of my life, intertwined with everything I do."

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

"As the pandemic dragged on, I heard the “regular” people bemoaning things they couldn't do now, going out, seeing friends...distraught & depressed because their life had been largely confined to their homes...I realized I'd lost all they grieved long ago"

“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…” #WhatIKnowIsReal

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

#FibroFog "And speaking of old age, as I watch my eighty-six and ninety-year-old parents struggle with memory problems, it occurs to me that I’ve had a lot more in common with them in that department, than my own peers..." #WhatIKnowIsReal

"I don’t know about anyone else, but I need to feel this…that I can do something that makes a difference! So. I have #fibromyalgia. I work on #stress." #WhatIKnowIsReal

“If I could go back and tell my early #fibromyalgia self to work on just one thing...work on getting restorative sleep." #WhatIKnowIsReal

"The pain, cramping and symptoms were bizarre for awhile...#IBS setting off #fibromyalgia pain setting off IBS pain. But my healthy diet enabled me to get right on top of that...quickly...and my IBS was largely controlled (fairly easily)...and still is."

”I’m trying to NOT focus on it…in fact, I try to focus on everything but it…my gaze is outward on life around me and not inward on my #fibromyalgia.” #WhatIKnowIsReal

So many people with #fibromyalgia tell me this, that they are so affected by the weather.

"I can only imagine how much more difficult it must be to be dealing with multiple debilitating chronic illnesses at once...what I would say to them is my blog could present an especially useful opportunity to them in a way maybe they hadn’t considered."