Tag: chronic-illness

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Doctors who are helpful with Fibro, thats the real treasure to find…

JoLeave a comment


Hi gang! I have some stuff to say about other topics but since its Fibromyalgia Awareness Month lets try and keep the Fibro convo going. Fibro’s a tough nut to crack when it comes to diagnosis because there’s no one-size-fits-all test that gives you a clear-cut answer. I totally get the frustration there. It’s crucial to team up with a doc who really knows their fibro stuff, one who listens to what you’re going through and doesn’t just slap everything under the fibro label. Sure, fatigue might be tied to fibro, but it could also signal something else lurking in the shadows. What if it’s a whole other issue that can be managed? It’s worth digging into. If your doc brushes off any of your worries, it’s time to find someone who takes you seriously. Seriously, advocate for yourself! Start by getting clued up on what you’re dealing with, arm yourself with info on what treatments are out there, what to watch out for, what might be red flags for other conditions. Sure, docs should be up to speed on all this stuff, but they’ve got a million and one things on their plate. You knowing your stuff gives you a leg up, at least you can point them in the right direction. Bring along logs of your symptoms, stuff you’ve tried, and hey, if you’ve found some golden nuggets of wisdom online, make sure they’re from a legit source. Doctors ain’t gonna take your brother’s buddy’s Facebook rant as gospel, and it just makes it tougher for the rest of us.

Ah, fibromyalgia, the mystical unicorn of medical conundrums, where symptoms are as clear as mud and diagnosing it feels like playing a round of medical bingo. Let’s paint the picture, you stroll into your doctor’s office armed with a laundry list of symptoms that could make even the most seasoned hypochondriac turn green with envy. But instead of the understanding you anticipated, you’re greeted with the classic eye-roll and the timeless response: ‘It’s probably just Fibro.’ Making you feel like its normal to hurt this way and you should just buck up and take it. You must be weak if you can’t handle it. Because, of course, who needs medical expertise when you’ve got stress to conveniently blame for every twinge and throb, am I right?

And when your doc finally has enough of your complaints they do the next predictable thing, referral so you are no longer their problem. The notorious medical dance – you know, where you hop from one specialist to another like a pinball in a machine, each one looking more perplexed than the last. “It’s just in your head,” they proclaim, as if that magically diminishes your pain, making it more… ethereal? Because obviously, feeling like you’ve been steamrolled by a freight train is just a whimsical creation of your imagination, not a serious condition worthy of genuine concern.

But fear not, dear patient, for there’s always the ever-popular misdiagnosis game to keep things interesting. Is it chronic fatigue syndrome? Is it rheumatoid arthritis? Is it just your body’s way of telling you that it’s time to invest in a better mattress? Who knows! It’s like playing medical roulette, except instead of winning a jackpot, you get a lifetime supply of confusion and frustration.

So, here’s to you, fibromyalgia warriors, bravely battling through the medical maze armed with nothing but your pain and a healthy dose of sarcasm. After all, if laughter is the best medicine, then you’re practically immortal.
Til next time gang, take care of yourself, and each other!

I forgot to add, George says ‘hey whats up?’ He’s off tearing shit up at the moment but he’s not going away lol.

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Tender Point Tango…

JoLeave a comment

Ah, fibromyalgia, the notorious party crasher of the nervous system. If you think of your body as a bustling metropolis, with nerves running around like frantic commuters during rush hour and sprinkle in some miscommunication among these nerves, and ta-da, you’ve got yourself a fibromyalgia flare-up – an event no one signed up for.

Living with fibromyalgia is a bit like playing a twisted game of “Guess That Pain.” You wake up each day, take stock of your aches and pains, and try to play detective to figure out which ailment is causing today’s particular brand of discomfort. Will it be a symphony of soreness or a relentless drumbeat of dull aches? The suspense is killing me…oh wait, no, it’s just the pain.

But there’s a secret component: the tender points. They’re like hidden treasure spots on a map of your body, except instead of gold, you find pure unadulterated pain. Seriously digging on these x’s are not going to find anything remotely rewarding. Prodding them is like poking a bear—you know it’s a terrible idea, yet you can’t resist the temptation to see if it’s still there, waiting to pounce.

Tender points in fibromyalgia are like little pressure-sensitive landmines scattered throughout the body’s landscape. Picture them as tiny protest sites where your nerves have decided to stage a full-blown rebellion against anything remotely resembling comfort.

These tender points aren’t just your run-of-the-mill sore spots and they arent there for decoration; they’re hyper-reactive areas where even the gentlest touch can trigger a symphony of pain signals that reverberate throughout your entire nervous system. While anyone can experience tenderness in various parts of their body, those with fibromyalgia have a specific set of tender points identified by the American College of Rheumatology.

Traditionally, there are 18 designated tender points, symmetrically distributed across the body, ranging from the base of the skull to the inner knee. Pressing on these points feels less like a gentle poke and more like poking a hornet’s nest—you’re bound to get stung.

The role these tender points play in fibromyalgia is twofold. First and foremost, they serve as diagnostic landmarks, helping healthcare professionals differentiate between fibromyalgia and other conditions that may mimic its symptoms. If you wince in agony at the mere mention of pressing on these tender points, congratulations, you’ve just earned yourself a potential fibromyalgia diagnosis.

But beyond their diagnostic significance, tender points are also notorious troublemakers in the world of fibromyalgia management. They’re like stubborn guests at a party who refuse to leave, no matter how many hints you drop. You may try to ignore them, but they’ll make their presence known with a vengeance, sabotaging your attempts at relaxation and hijacking your sleep.

Moreover, these tender points often team up with their cohorts—muscle stiffness, fatigue, and sleep disturbances—to form a formidable alliance against your well-being. They thrive on chaos, exacerbating each other’s effects and leaving you feeling like you’ve been hit by a proverbial pain train.

But fear not, brave fibromyalgia warrior, for knowledge is power. By understanding the role of tender points in your condition, you can arm yourself with strategies to manage their mischief. From gentle stretching and low-impact exercise to stress management techniques and medications, there’s a plethora of tools at your disposal to tame the tender point beast and reclaim control of your life. So the next time those tender points come knocking, show them who’s boss with a steely gaze and a well-aimed dose of self-care.

So here’s to the fibro warriors, bravely battling your own body through each day armed with a healthy dose of humor and a stubborn refusal to let pain steal their joy. After all, if life gives you fibromyalgia, you might as well make jokes about it. Until next time guys, take care of yourselves, and each other.

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Fibro Fog…

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Today I’m picking a symptom to discuss that I have found particularly difficult and vexing, Fibro Fog, where everything you were JUST thinking about disappears into a mist. I think all the evaporated thoughts are hanging together, in the air, and we just have to hope they blow by us again close enough for us to hold on to and actually implant in our brains. I’m not talking forgetfulness I’m talking if you don’t write it down its already water vapor lol. I can hear you now, ‘but can you give us any examples that are entertaining as well as informative?’



Of course, who do you think you’re talking to? No I’m really asking, because I forgot lol just kidding.

Imagine your brain decided to take a leisurely stroll through a dense fog, but instead of enjoying the tranquility, it got lost, took a wrong turn at Albuquerque, and ended up in a carnival funhouse where all the mirrors distort reality. That’s fibro fog for you, the mischievous gremlin that hijacks your thoughts and turns your thoughts and ideas into a wacky, unpredictable carnival ride.

Picture this: You wake up in the morning, ready to conquer the day like a boss/Queen/Goddess slaying everything in your path, only to realize your brain is still in snooze mode, mumbling something about needing more coffee before it can even consider joining the party. Its there, its just on a delay if you will, like they use on broadcast tv before anything live they have it on like a 10 second delay with someone on the button in case someone lets out curse words best kept to themselves? When fibro fog happens to me I feel like I’m hearing everything being said but it doesn’t make sense in my head, it takes me minutes to process the information I am given, so we will have had a full discussion but in truth I don’t even understand what you said until 10 minutes later. That means any clarifications I might need I’m already too late to ask, so I will convince myself I did it wrong. I’ll find myself standing in front of the fridge, wondering why on earth I opened it in the first place, while my keys I was searching for a few minutes ago mock me from the depths of my purse, hiding in plain sight.

Trying to hold a conversation becomes a high-stakes game of mental acrobatics, where you’re juggling words like a circus performer, desperately hoping they’ll land in the right order. Suddenly, your train of thought gets derailed faster than a toddler on a sugar rush, leaving you stranded at a mental station with no idea where you were headed.

In essence, fibro fog turns your brain into a whimsical, slightly dysfunctional amusement park, where every thought is a rollercoaster ride and every memory a slippery slide. So, next time you encounter someone battling this quirky phenomenon, just remember – they’re not lost, they’re just taking the scenic route through the carnival of their mind.

Til next times guys, stay kind to yourselves, and each other!

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We’re only a third of the way through the month…

JoLeave a comment

Hi All! In honor of it being Fibro Awareness month, I felt like laying some facts about fibromyalgia and gaslighting. More common than you think and even the smart ones fall for our brains tricks.

First off, fibromyalgia is like the ninja of chronic illnesses—it’s stealthy, it’s everywhere, and it hits you when you out of the blue. One day you’re fine, and the next, you feel like you’ve been hit by a truck made of exhaustion and pain.

Oh, and let’s talk about the diagnosis game. Picture yourself as a contestant on a really crappy game show where the prize is knowing why your body hates you. Your doctor throws every test in the book at you, from blood work to MRIs, all while you’re sitting there thinking, “Can we speed this up? My body feels like it’s been through a wood chipper.” Every new med comes with a side effect that you have to chase with another pill, its a cycle.

And here’s a fun fact: fibromyalgia isn’t just about pain. Nope, it’s a whole package deal. You get fatigue that makes you feel like you’ve run a marathon on zero sleep, brain fog descends to wreak havoc, and sleep problems that make you envy a cat’s ability to nap anywhere, anytime.

But wait, there’s more! Fibromyalgia loves company. It’s best buds with conditions like irritable bowel syndrome (IBS), migraines, and depression, because why deal with one pain in the butt when you can have a whole party of them?

Picture this: you’re dealing with this condition called fibromyalgia, where you’re in pain all over, tired as hell, and your brain feels like it’s stuck in a fog. But here’s the kicker: there’s no fancy test that says, “Yep, you’ve got fibromyalgia!” So, you’re left playing a guessing game with your doctor, ruling out everything else under the sun.

Now, imagine dealing with all that uncertainty. You start wondering, “Am I just making this up? Is my body punking me?” Do you know how many times in a day I try and tell myself that I don’t hurt? It’s like gaslighting yourself—convincing yourself that maybe the pain is all in your head because there’s no lab result to back it up.

And let’s not forget the joy of visiting the doctor’s office. You pour your heart out about how much you hurt, how tired you are, and how your brain feels like it’s on vacation. You bring witnesses, you show how you’ve logged all the symptoms. But instead of a pat on the back, you get a shrug and a “Well, your tests look fine.” or ‘Well that’s a common symptom of Fibro’

So, yeah, it’s a real treat trying to convince yourself and others that what you’re going through is legit when there’s no shiny test result to prove it. Its why they call it an invisible illness. But fibromyalgia is as real as it gets, even if the medical world hasn’t quite caught up yet.
Thats it for tonight guys, take care of yourself and each other

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Well staying past your welcome is just plain disrespectful…

JoLeave a comment

I think you can judge by the title what kind of day its been. You probably don’t want or need to hear how the palms of my hands are burning, but I’m going to tell you anyway, because I don’t have to fake smile with you. You don’t need me to be strong. You don’t need me to make responsible decisions. I LIKE that about you so thank you to the one person skimming this with their cereal while doing the crossword, I appreciate you. (Is it raisin bran? You seem like a raising bran person. I am a raisin bran person so I can spot my fellow raisin fans. But I’m also feeling corn flakes and fruit loops and so there’s room for error LOL). We’ll get into that too, the scrolling while doing a crossword and eating cereal. I feel you, I have to keep myself busy too. Its neurodivergence and we will discuss it in great detail once I can form words. I really should write these in the morning before the brain fog machine starts cranking, but nothing has happened by then generally. I’d write about the previous day’s activities but my day gets blurry when I look back. There’s a sweet spot I’m sure I just haven’t found it yet.

So I didn’t do much, one load of laundry, vacuum, dinner, exercise that’s the extent of it. Lots of inside my own head and reflections and spent a bit with monkey just watching tv. Now sitting here I’m getting this weird pain in my chest scaring myself but I’m sure its nothing, I’m a hypochondriac. I know this about me so its likely just a panic attack and I’m perpetuating it worrying about what and why I’m worried about it, I’m telling you its a math riddle I’m not even sure I could do the math and I’m the one who wrote the problem lol.

Anyway, I am proud of myself for making it though the monotony. If nothing else I’m always proud of myself even for just getting up as well as incredibly grateful I’m blessed to be here and breathe this air today.
I wanted to see if I could talk for a minute about the pain I’m experiencing. Maybe one of you has something similar, they all suck so in no particular order
MY HIP: Ok so there is a clear hierarchy on the pain in my body and hip decided to take point on this one. It feels as if there are electrical wires as my nerve endings and every time I hit it just right BLINDING pain. Its been this way for a while and will have me on the floor in a second if that hits. Nothing helps. Its been happening for over a year and my doc just throws up her hands and shrugs and says ‘that’s fibro?’ I get it but having been having extreme symptoms for over a year, maybe we try something else? She talked about shots and I’d consider it but I’ve read some not great things about it and I’m only putting myself through that if a higher percent of cases are a lot better.
Burning in palms and soles of feet: So this one is fairly new. I don’t know how else to explain it other than it feels like those, are they called thistles? Like soft thin thorns under my skin. It burns like poison. I don’t know what they are, but I can’t help but think this and the electrical shock pains seem like they could be the results of a pinched nerve

“Road Fog” by Ksenia Kudelkina/ CC0 1.0


THE FOG: The never ending roll after roll of thought stealing mist that is blanketing my area. I don’t think I can explain it better than that and I think if you get it my analogy would work well describing it. Simple words I have been saying all my life won’t come to mind when I need them. Under this header you can also find ‘walking into a room and having no idea why I went in there so I start doing something else, stay busy all day, and only remember when I’m laying down to sleep that I never got the thing I went in there to get. Often several times. Also, losing total track of your point minutes in to a conversation, like as you are speaking, the words evaporate like Thanos snapping his fingers. I heard a comedian’s description once and it was spot on. My brain hears some things it can’t properly process and decides to go on a little walk about. Yup, my brain doesn’t understand what its hearing so it gives up, only a short time later it catches up and wants to say something but the convo is already on something totally different.
The exhaustion: Like enough said. But its not just feeling tired all the time, its feeling tired of this or that. A lackadaisical why bother kind of vibe. I’m just so over everything.
Wide spread tender points: they all suck. Also super sensitive to tastes, smells, noise.

That’s just the fibro. We’ll talk more about mania tomorrow. Maybe. We’ll see if it pisses me off

How about you guys? Anyone have anything to add to the list? It sucks and I am proud of you for getting up and battling it. I’m going to crash, take care of yourself and each other.