This is a no-punches-pulled account of life with Fibromyalgia. It is NOT intended for the faint of heart or the easily grossed out. It is the truth about FMS and nothing but; it is not, however, the yippy skippy kid friendly commercial version you see on TV. Consider yourself warned, and continue reading at your own risk.
This is the first "hub" I've ever written, as I feel it's something that is not really explained thoroughly by the medical community. Someone recently criticized me for smoking marijuana to curb the stomach problems (explained below) as well as many other symptoms that there is simply NO other treatment out there for, so I thought I'd explain, in detail, what living with Fibromyalgia is like, and why I have a Prescription for Medical Marijuana. And please, take the Lyrica and shove it straight up where the sun don't shine. All it does (as I understand it) is address joint pain, that's one of over 60 other symptoms of FMS.
And please, spare me the rhetoric about me being "too young" to have FMS. I was diagnosed by one of the best Rhemotologists in the State of California at the ripe old age of 14 years old. Indeed, one of the youngest cases ever recorded, as well as one of the most severe. I've used the "Fibromyalgia Symptome Checklist" from http://chronicfatigue.about.com/od/whatisfibromyalgia/a/fibrosymptoms.htm narrowing the list down to only contain the symptoms I deal with at least once a month...which, kind of sadly, is most of them.
- Delayed reactions to physical exertion or stressful events
This is a fun one. Rather than process stress as it normally would, as it comes at you, FMS causes your body to "store" the stress and then release it in one fell swoop; generally a month's worth at a time. Imagine how stressful your daily life is, now imagine having 30 days worth of stress hitting your body all at once. Another way to put it, is imagine having the stress & strain of a hard workout at the gym for a month, hitting your body in about 5 minutes.
This one is great as well, no matter what you do, no matter what antipersperant or deodorant you try, you sweat. A lot. At least for me, to stay "clean", I have to shower at least twice a day which of course, does wonders for your skin & hair.
- Unexplained weight gain or loss
It's like a freakin' roller coaster! I never really know what my current weight is, as I generally fluctuate give or take 50lbs. Try clothes shopping, when you never know if you need a Medium, Large, or X-Large - or if that's going to change tomorrow.
- Cravings for carbohydrate and chocolate
BRING ON THE CHOCOLATE! And heaven help you if you don't have any stored up. You will eat anything & everything in sight until you finally figure out, hey, my body's craving chocolate. If you don't get it, you'll continue to eat until you vomit from being "too stuffed".
- Headaches & migraines
Everyone's dealt with headaches and/or migraines at some point in their lives...but imagine that happening on a recurring basis & there being nothing you can do about it. It's about a 50/50 chance if over-the-counter meds are going to have any impact at all, and generally IF they do, it's minimal. For those FMS sufferers out there, for me at least, BC Powder works WONDERS. Walmart now carries this wonderful, and rather old, drug...used to only be able to find it at truck stops.
- Vision changes, including rapidly worsening vision
I've gone from being far sighted, to near sighted and back. I've given up on glasses, as the prescription would have to be adjusted about every other month & that gets expensive, quick.
Muscle & Tissue Related
- Pain that ranges from mild to severe, and may move around the body.
And you actually FEEL it moving. It's great, feels like something's under your skin. Might start as a slight cramp in your neck, then WHAM you're in tears because your shoulder is suddenly throbbing, then it'll hit your knees - and even your butt cheek! It's crazy!
- Morning stiffness
Oh, getting out of bed is a real bitch. That first half hour after waking up, IF you can move at all, it's slowly and very stiffly. For those of us out there that have to work an 8 - 5 job, this means getting up at LEAST an hour earlier than you normally would, just to make sure your body "unlocks" in time for you to hit the shower.
- Muscle twitches
Another fun one. You feel like you're having a seizure or something. Out of nowhere, some random body part will start moving on it's own. And it doesn't really matter what body part, or if that part of your body is even SUPPOSED to move. Maybe the corner of your lip will start twitching, your eyelid will flutter, your ear will do a jig or the one that always makes me laugh, my butt cheek will start wiggling. It's awesome!
- Diffuse swelling
Out of freaking NOWHERE, your hands will "inflate" to about 3 times their normal size. With me at least, it's usually my hands. I've heard of others experiencing it in their face, feet or generally any other body part....except for the one men wish it would hit.
Sinus & Allergy Related
AAAAAH CHOOOOOOOOOOO!!!! That is the sound of me waking up in the morning...afternoon...night...whenever I happen to roll out of bed, again. It's awesome! You sneeze so hard & so loud, it literally will tear the lining of your throat. I've had my sneezes clocked at over 300mph; if memory serves, the average person sneezes at about 125mph (I could be wrong on that but it's pretty close). Anyone in the vicinity of one of these monster sneezes will usually start bitching that you're making their ears hurt. Like you're doing it on purpose or it's not hurting you!? "Ya think it hurts your ears honey, TRY HAVING IT COME OUT YOUR LUNGS!"
- Post nasal drip
If it's not running out your nose, it's running down your throat. A sore throat is pretty much your constant companion, and on bad months, that will lead to tonsillitis, your throat swelling shut, being unable to drink, let alone eat anything. For smokers, yeah, about 2 drags & you're done. Try again later.
- Runny nose
Drip, drip, drop little April...snot? Oooooh yes! Your nose is CONSTANTLY running, you spend more on tissue than food & if you happen to be out shopping all day and are a man (thus not carrying a purse) you're pretty much screwed. There's no way in hell you can fit enough tissue in your pockets, to survive any kind of extended outing. Forget handkerchiefs, they're completely saturated in under half an hour. Sleeves, pant legs, the hair of the woman in line in front of you....ya know, whatever's convenient at the time will become the victim of this nasty little symptom. It's either that, or have snot running down your face constantly & who wants that? You also get to run around looking like Rudolph the Red Nosed Retard because you've blown your nose until it's absolutely bloody, chapped & hurts to even look at. Then this symptom will let up for a while, and you get to deal with your nose being chapped & peeling. It's so attractive!
- Mold & yeast sensitivity
I've tried the allergy shots. I've tried the pills. I've tried everything the best allergists that money can buy can come up with. NOTHING works, but it sure will amp up the snot flow, I'll tell ya that. I've also discovered Red Mold, unlike the rest, will cause massive sinus pressure resulting in a migraine so bad you can't even see straight - literally. Everything was upside down for a week until I finally found the source - a pot I had cooked in a week ago, that apparently wasn't COMPLETELY dry when I put it away! I thought someone was pulling some sick joke on me or something.
- Shortness of breath
Want to get in shape? Forget about it. You can't breath enough to do sit-ups or really do any kind of "exercise routine". I've tried the gyms, I've tried personal trainers, I've tried those damn twist & shout contraptions you see on late night infomercials. None of them take into account that you can't breathe, or really move well to begin with.
- Earaches & itchy ears
Oh, this one is really fun. Ear aches are a part of your daily life, and if your ears happen to not hurt, they itch - ON THE INSIDE. You try your pinkie finger, won't fit. Can't find a Q-Tip to scratch the itch. What to do? I've gone so far as grabbing a bic pen off my desk, wrapping a bit of the ever present tissue around the end & using that. Anything really. It's nothing short of a miracle I haven't blown at least 1 ear drum by now. The constant sneezing helps though, as you release pressure out your ears, painfully, it will also "scratch the itch".
- Ringing ears (tinitis)
WHAT??? WHAT DID YOU SAY??? I CAN'T HEAR YOU??? THERE'S A GONG GOING OFF IN MY HEAD!! Well, not really a gong, but a high pitched, and I mean HIGH pitched, ringing. It's so loud, forget about hearing anything else until it goes away.
- Thick secretions
I have literally thought that I had just blown a piece of brain out my nose. Your snot, if you actually happen to get it to dislodge from your sinus cavity, will come out thick, gray and looking like what most of us expect brain matter to look like. It's usually accompanied by a bit of blood from the force of the sneeze that caused it to make an appearance....talk about a "WTF!?" moment.
- Light and/or broken sleep pattern with unrefreshing sleep
zZzZz....HELLO WORLD! You sleep in about 2 hr increments, and no matter how much you sleep, you're always tired. Sleeping "through the night" is a rare & blessed event.
Sleep all you want, or as much as you're able, you'll always be tired. Caffeine becomes your best friend, and after a few years, even that doesn't work anymore. Thankfully the energy drink makers have stepped up their game & are constantly coming out with bigger buzz producing products. But then that just steps up the insomnia, and eventually you end up with kidney stones. So drink plenty of water, if you go that route.
- Sleep starts (falling sensations)
Standing in line at Walmart, and next thing you know you FEEL like you're falling forward. You grab the person in front of you for balance...but don't expect them to be understanding at all, and don't even bother trying to explain. Just accept that they now think you're a whack-job trying to sneak a quick grope & move on.
- Twitchy muscles at night
For me, it's my legs. They kick on their own, then my hips will spaz, it's like trying to dance and sleep at the same damn time. It's great. Forget about having your partner sleep next to you, unless they're into getting their butt kicked all night. Literally.
- Teeth grinding (bruxism)
Which eventually wears down the enamel on your teeth, so especially as you get older, you are prone to cavities & many other "dental problems".
- Loss of libido
It goes back & forth. For months, you have absolutely ZERO interest in sex & then it's like you're 17 again and you want to hump anything and everything that stands still long enough! Trying to find a partner that's understanding of that, has proven to be all but impossible. "But honey, you've been refusing to have sex for months, you say I don't turn you on." "SHUT UP & DROP YOUR PANTS OR I'M GOIN' AFTER THE DOG!"
Houston, we have a problem. Hydraulics have failed. You might get it up, but forget about it staying there without pretty constant stimulation. Don't even bother with the "blue pill", it doesn't work (at least for me) when it comes to FMS. It's a great way to cause even further insecurities and confusion in your partner however.
Abdominal & Digestive Related
- Bloating & nausea
No matter what you eat, or if you've eaten anything at all, suddenly your belly is 3 times the size it was an hour ago & feels like it's going to pop. Between this, and the rapid weight loss/gain, I have to keep Sizes M, L, XL, and XXL in my closet at all times because there's really no telling what "size" I will be that day or for how long.
- Abdominal cramps
You're sitting on the toilet, doubled over in pain. Some of the most intense pain I've ever felt. It feels like someone is traveling through your intestines dragging a knife on the wall & stabbing at random. You cry, you scream, you make noises you didn't even know you were capable of...to walk out and find your partner standing at the bathroom door wondering what the hell is going on. You try to explain, and the next wave hits, you grab your stomach & drop to the floor in tears. "Do I need to call 911?" "Nooooooooooooooo....." "Was that No or Ow?" "Owwwwwwwwwwwwww I MEAN NO!"
- Irritable bowel syndrome
The delayed stress release hits and suddenly your ass is old faithful. You bolt for the bathroom every 5 minutes, sit there for an hour hoping it's done, just to wipe & PFFFFFFFT. Oh Lordy, here comes some more. You poop, and poop, and poop until your butt hole is absolutely raw. Forget about ever having a clean toilet, you'll just go in there and "blowout" again here shortly. Oh, and forget about trying to treat it with things like Imodium D, that will just cause you to go constipated & the bloating, nausea and abdominal cramps get even worse; eventually landing you in the ER to get "hosed out" & things flowing again.
- Urinary frequency
And I do mean frequency. You pee almost as much as you poop. It's amazing I haven't shriveled up like an old prune from dehydration.
- Difficulty speaking known words, other language impairments
You stumble over your words like an old senile person. The word is RIGHT THERE, it just won't come out of your mouth. I think my most common word spoken is "uh", and I generally come off looking like a total moron, despite the fact that my IQ is nearly off the chart (167 Mean on a scale of 200).
- Directional disorientation
You and the homing pigeon have a lot in common. You never really take a direct path to where you want to go, you have to make a few circles to get your bearings. While out walking with my sister one day, the maybe 5 blocks to the mini-mart to snag a soda & cure the ever present cotton mouth, I made several wrong turns. She finally looked up "Michael, are we lost?" "Yup, but it's cool dude, I've been lost here before. Follow me."
- Poor balance and coordination
Forget about Karate. Forget about playing video games. Hell, forget about working as a Barista in a coffee shop. They've called me Turtle since I was 14, because I am very much the "slow and steady wins the race" type. If I move too quickly, you better not be anywhere near me. Depth perception is nearly non-existent & I couldn't hit a "bulls eye" with a dart if my life depended on it. Falling is a frequent thing for you & you learn, especially when out in public, don't venture too far from something to reach out & grab for balance at a moment's notice.
- Paresthesias in the upper limbs (tingling or burning sensations)
The ants are marching 2 by 2, ow! ow! Ow! OW! It feels like a constant stream of ants marching, and stinging, UNDER your skin, up and down your arms. No matter how much you scratch, swat or try to convince your cat to help, they're there. It "comes and goes", thankfully, but it hits at least once a day & there is not a damn thing you can do about it.
- Loss of ability to distinguish some shades of colors
Is that pink or red? Who knows. Quick, grab the person shopping next to you & ask, or run the risk of buying it, wearing it, and having the public point & laugh at you for being a man wearing hot pink....when you thought it was a deep red.
- Short-term memory impairment
Oh this one is fun, I'm 28 years old & come off as senile. I'll loose my train of thought in the middle of a sentence, have absolutely NO idea what the hell I was talking about. The person I'm talking to had best have a good memory, because we're going to have to back track at least 15 minutes into the conversation to figure it out. Trying to hold a phone conversation with me is a real trip, especially when I'm talking with a friend that also has short term memory loss. One such friend, we drive her husband nuts; he tries to eves drop & listen to the conversation, but can't follow it. Finally he'll yell from frustration that he has no idea what we're talking about, and we'll tell him that that's ok, neither do we.
The fact that I'm a natural blond, really is my saving grace. It's my excuse for just about everything in this section. "uhhh you just confused the blond again..."
- Trouble concentrating
You're trying to focus on your work, but a bird tweets outside. Totally blows your concentration. Then a light on your laptop flashes, and there it goes again. The 4th of July is really fun, I'll be in the middle of a deep conversation, stop mid-sentence to let out a "ooooh pretty!".
- Staring into space before brain "kicks in"
Forget about your dream of being a UFC fighter. You'll space out half way through the match and get your ass handed to you. If it's not something shiny grabbing your concentration, it's just...well, whatever the hell it is my brain wanders off to go focus on. You stare off into space, start to drool...and then your brain will kick back in & you don't even know you've been standing there drooling for the last 5 minutes, wondering why people are staring.
- Inability to recognize familiar surroundings
My android phone is now my best friend. I love the "Where am I?" app. It gets tapped frequently, because despite the fact that I've walked to the corner store a million times, I'll still get lost. You'll also wake up, and even though you're at home, where you've lived for the last 10 years, you have absolutely no idea where you are or what bed you're in.
- Sensitivity to pressure changes, temperature & humidity
I'm a walking barometer & far more accurate than any weather man. I can tell you DAYS in advance, long before it'll hit the news, that there's a thunderstorm on it's way because I have a migraine, or feel one coming on. It might not even actually hit where I'm at, it's just passing somewhere close enough to slightly alter the barometric pressure, temperature or humidity. You have a very low tolerance for cold, or heat & even in the winter with it snowing outside you find yourself flipping your central heating & air unit from Heater to A/C and back because your body can't make up it's mind if you're hot or cold...or both? If the temperature hits 80F, your lungs start to shut down like you just wandered into a pizza oven & are trying to breath the air in there.
- Sensitivity to light
My shades are my constant companion. Can't go outside during the day without them & forget about being able to wear anything stylish, they're not tinted dark enough. I am very thankful there is such a thing as "Fisherman's Sunglasses", because they're just about the only non-prescription lenses tinted anywhere near dark enough to keep the sunlight at bay, but still be able to see, and thus avoiding yet another migraine.
- Sensitivity to noise
Do you hear that? That humming? What the hell is that? Everyone in the room looks at you like you're nuts because they don't hear a damn thing. You start hunting because the sound is slowly driving you insane, asking people how they can NOT hear that? It's loud as hell! ...just to find out, it's the nearly silent hum of the refrigerator, a squeaky fan blade on the A/C unit on the roof or God knows what else.
- Night driving difficulty
Driving at night makes the lack of directional sense even worse, as well as the failure to recognize familiar surroundings as everything looks different at night. The headlights of cars cause you go to go blind with stabbing pain, but you're not allowed to wear your sunglasses because a cop's GOING to pull you over & inform you that's illegal. Then you feel like you're totally lost, and the panic attacks set in....
- Sensory overload
Too much light, noise, people....oh public outings are so fun! It was hell for my parents taking me as a kid to Chuck-E-Cheese; all the games, people, kids screaming...would eventually lead up to me having a major melt down. Even now, as I write this, the refrigerator just kicked on with it's silent but not silent hum, so I need to go shut the A/C off, the two combined are driving me nuts. BRB....assuming nothing shiny catches my eye, I don't have to bolt for the bathroom or any of the plethora of other symptoms don't kick in.
- Panic attacks
AHHHHH!!!!!!!! Out of nowhere, your heart is racing, your sweating, you're scared out of your mind....and have no idea why.
Oh this is a fun one, and probably one of the...hang on, now the fridge is driving me nuts...wonder if I unplug it long enough to finish this article if my food will go bad? I'll wait for it to kick off just to be on the safe side. Sit tight, I'll be with you shortly.
....aaaaaaaaaaand I'm back. It's now 3 days later because Facebook caught my attention and then I wandered over to one of the other ever-present 30 tabs in my browser. How I ever manage to get anything done, is beyond me. Anyway, DEPRESSION. It's a bitch. You sit at home, alone, all day because you can't handle all the "stimulation" of the outside world, and your psyche does what it's only natural to do, starts sinking you into the bottomless abyss that is depression. You slowly loose your will to live, so you go out, trying to find another human to interact with...just to have them spend about 30 minutes with you, decide your nuttier than squirrel shit & bolt for the hills; thus making you feel like a freak, and you sink even further.
- Tendency to cry easily
This one's really fun for a man; women can generally get away with it. You're viewed as a total wuss because the slightest confrontation will cause you to burst into tears. Or it doesn't even have to be a confrontation, a random thought of some sad event from your distant past will wander through your brain & suddenly you're bawling like a new born baby & have no idea why.
- Free-floating anxiety
This one firmly places me in the "hard to handle" category & has scared off many, many men and women I have attempted to date. You perseverate (obsess) over just about anything, work yourself up into a tizzy & start ranting like a mad man because you simply can't keep it botted up due to the ever present risk of depression.
- Mood swings
I mood swing like 20 women PMSing rolled up into a rather attractive package (if I may say so myself *smirks*). It's like an emotional roller coaster, most people assume you're bi-polar or just go right back to thinking you're nuttier than squirrel shit because you were JUST happy, laughing & joking - and now you're mad as hell, quickly followed by bawling your eyes out.
- Unaccountable irritability
Oooooh yes. The slightest thing will set me the hell off. Stupidity in general. Lazy people being another. Trips to Walmart are always fun and I've been escorted out more than once.
- Rapid, fluttery, irregular heartbeat
It feels like there's a fish flopping around in your chest, which you then stress about & the damn panic attacks set in again.
- Pain that mimics heart attack
More than once I've reached for the phone to call 911 thinking I'm having a heart attack, as it feels like what people always describe & you see in movies...just for it to go away & not come back...for a few months at least. I hope to God I never actually HAVE a heart attack, because I'll probably just sit here & die thinking it's just the FMS again.
Hair & Nail Related
- Pronounced nail ridges
My cat ain't got nothin' on the claws I can grow.
- Nails that curve under
This one has been a constant thing for me since I was a youngster, it mainly impacts my toenails. They're thick as hell and eventually become painful. I'll eventually catch one of the "Pronounced nail ridges" on something & rip the thick ass nail off altogether.
- Hair loss (temporary)
My cat also has nothing on me when it comes to shedding. I leave more hair laying around than a sorority house. Thankfully it always grows back, and I don't end up with bald spots, but I'm never really sure & I'm pretty obsessive about my hair aaaaaaaaaand bam! There's another panic attack.
Well, thank you for reading my little rant, I hope you were able to at least find some of the humor intended. Living with FMS is just GREAT....not. But hey, it's life & there's not much that can be done about it. So I try to make the best out of it that I....I'm going to kill that damn refrigerator.