Irritable Bowel Syndrome Message Boards | Fibro: more than you ever wanted to know. (in honor, belatedly, of fibro awareness day) LONG POST.

i think i explained this before but can't find the link. (?!) maybe i can do it better today! (and with any luck, i'll remember to toggle it as a favorite so i can find it next time!)

ok, here goes.... buckle your seat belt!

FIBRO
fibromyalgia (AKA "fibro" or FMS or ME -Myalgic Encephalomyelitis- in England and the rest of the world) is a chronic pain and fatigue illness. "chronic" means it's not going anywhere. ever. however, it can be controlled and, according to some, sent into "remission." it's "non-progressive," which doesn't mean what it sounds like it means. it doesn't mean fibro will never get worse. unfortunately, it does get worse for some people. "non-progressive" means it's not gonna kill ya. (reassuring, but also not. IBS is also "non-progressive." at times you may wish it would kill you, but it won't!) fibro is not technically a "disease." to be labelled a disease, an illness has to actually have some kind of destruction involved. fibro doesn't actually destroy muscles, tendons, ligaments. it just feels like it does.

YES, I SHOWER.
let me start closer to the beginning.... fibro patients have overwhelming pain and fatigue. when i say "fatigue," i don't mean we're lazy or sleepy or a little worn out. imagine the worst flu you ever had--- the one where you couldn't lift your head and things were kinda fuzzy and reading a magazine was difficult. dragging yourself to the bathroom to pee was an ordeal, and taking a shower sounded like running a marathon, so you just skipped it. fibro is like that, but worse. (umkay, yes- i shower! daily!)

FATIGUE
fibro fatigue is a deep, uncontrollable exhaustion, but it's also muscle weakness, too. sometimes fatigue is right after exertion (even minor exertion- the kind you don't think of as exertion at all!). for example, i was in a flare a few weeks ago and eventually built up enough strength to go to the bookstore. i walked around for 45 minutes or so, carrying a fashion magazine. towards the end i also picked up a small paperback novel. then i went home. i took a 2 1/2 hour nap to recover and for 2 days my arms hurt from carrying that magazine and book. other times, fibro exhastion comes from out of nowhere, seemingly. like IBS, stress could have triggered it, but stress does not cause fibro just as stress does not cause IBS. it's an aggravating factor for both syndromes, indeed, but not causal.

PAIN or... HOW I MADE MY BEST FRIEND CRY
ah, the pain, you ask? well, that's a great big barrel of fun. scientifically speaking: fibro patients have a lower pain threshold and abnormal pain response. what this means is if you and i (assuming you're not a fibro chick/dude) get hooked up to EEGs and then are given the exact same mild pain stimuli (say... a prick with a needle)(no, that wasn't a doctor joke), your brain waves will reflect a minor jump in patterns that doctors recognize as "pain." my brain waves!? well, they'll go wild. see... the pain is not "all in my head" as some people believe- you can tell! the proof is right there in my head! then there's the really tricky part: not only do i find things more painful than you, but i also react to non-painful stimuli as if it were painful. again, tested and proven in a lab. believe it or not (and i do believe it), despite all this, fibromyalgics often have a higher pain tolerance than our non-fibro friends. weird? i agree, but maybe it's 'cause of all the pain, all the time. who knows? so really, if your fibro friend is floored by pain, i'd wonder what it might do to a non-fibro person.

(case in point, my friends marvel at the fact that i don't consider bikini waxes painful! they're not that bad, really, all things considered! i felt like a sent a lamb to the slaughter when i convinced my best friend to go for one. i told her it wasn't that bad. she cried. oops!)

MY THEORY: IBS AND FIBRO MAY BE RELATED.... IN A WAY.
neorotransmitters... well, some of 'em... deal with pain and its perception. in IBS, because of the way the GI tract in IBS patients is working (or not, depending on how you want to look at it!), gas or contractions that IBS patients experience as painful are not perceived that way by non-IBS patients. is it in your head? no. you are experiencing the pain, it cannot be denied! the same holds true for fibromyalgia. my theory is that a new neurotransmitter (or new function of an existing neurotransmitter) will be discovered and explain why in fibro and IBS (and chronic fatigue syndrome) non-pain stimuli is perceived as painful and painful stimuli is perceived as more painful than in non-patients, in some cases, profoundly. (note: it appears that "messing with" seratonin levels can impact both IBS and fibro, though it doesn't really cure it or even make it 80% better in most cases. seratonin is....you guessed it! a neurotransmitter! i think once we find the right neurotransmitter or combo of them, we'll be on our way to better pain management in these illnesses.
DISCLAIMER: i did not say that IBS is caused by fibromyalgia. it is not. nor is fibromyalgia caused by IBS. many fibromyalgics have IBS, so you'll see us on the boards. there is no reason to believe at all that having IBS predisposes you to having fibromyalgia. i repeat: having IBS does not mean at all that you will get fibromyalgia!

IN CASE I DIDN'T MENTION THE PAIN....
fibro pain is shooting, stabbing, cramping, dull, sharp... all the things you expect from pain. the trick with fibro pain is this: it moves! (YIPPEE! what fun!) i may have a migraine today, but tomorrow my knee is killing me. i may be stiff every morning when i wake up or after sitting in the same position for a while (um... try 5 minutes!) or being in a draft. Wednesday, my hips hurt and my arms are weak. Thursday i feel fine (except for the usual aches that are always present in fibromyalgics). my IBS flares next Monday through Friday, with a bonus back spasm that knocks me off my feet on Wednesday. see? fun, huh? THE BEST PART: mostly, pain meds don't help! "WHAT!?" you yell, "how could you been in that much pain all the time with no relief!? surely [insert prescription suggestion here] will help!" NOPE, not really. sometimes it can take the edge off, but really for the most part, you've gotta rest, and exercise, and take pain meds and sleep meds and maybe a seratonin-booster and get massage therapy and other PT and.... yes, lots of things put together and eventually you may reduce some of the pain, some of the time. ask Laura Sue how well her migraine meds helped her migraine that lasted weeks last month. (poor LS!

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IS IT FOGGY IN HERE, OR IS IT ME? or... WHERE I PRETEND I'M SUMMARIZING AS IF TO END THIS LONG POST, BUT I REALLY AM NOT.
wow, i talk a lot! last up: fibro has many other lovely bits about it. you may hear tell of "fibro-fog." because fibro is a disruption of the central nervous system (neurotransmitters work in the CNS, pain is a function of the CNS), some mental ("cognitive") treats come into play. fibro-fog ranges from forgetting a word when talking or writing or thinking ("aphasia") to getting lost in your own house. yes, that can happen. putting the (soy)milk in the cupboard, the cereal in the fridge: fibro-fog. losing your keys daily: fibro-fog. forgetting your sibling's name: fibro-fog. finding daytime TV too confusing to follow, a fashion magazine confusing: fibro-fog. forgetting someone's name after being introduced to him: fibro-fog. (Funny story: my best friend met a guy when we were out a few weeks ago. they've been writing emails back and forth while he was out of town and are going to go out when he gets back. i can't for the life of me remember the dude's name. in fact, i just now called to ask again - she thinks my fibro is funny sometimes. it is! anyway, his name is Gene, in case you were curious. i'll forget that in a few minutes)walking into a room and realizing you have no idea why you're there: fibro-fog. "but," you say, "that happens to me!" of course, it's called humanity. but for fibromyalgics, it happens a lot and frequently and it can be scary. imagine driving down the highway you take to work everyday and suddenly feeling lost. yes, scary. fibro-fog!

TO SLEEP, PERCHANCE, TO DREAM.
some people think that disordered sleep is responsible for fibro (and chronic fatigue syndrome). i agree that it is, in part, though i think those pesky neurotransmitters are the cause of the sleep disruption, but no one asked me, did they!?

some fibromyalgics are insomniacs (from the pain, maybe, but it could be just plain old insomnia, too). some wake up multiple times in the middle of the night (often feeling like they have to urinate), some wake really early, others can't get to sleep. some of us sleep really really lightly. here's the trick: i believe (so do many researchers) that fibromyalgics aren't getting Stage 4 sleep, in which your body does it's regenerating. that's the deep sleep where you're not even dreaming (that's REM sleep/Stage 1 sleep where your mind repairs itself. didn't know you were so busy in your sleep, now didja!?). i'm keeping this brief (the sleep bit, not the whole shebang), but really sleep is a big thing that deserves its own million-page book! i'll spare you that.

SO WHAT DO I WANT YOU TO DO ABOUT IT!?
so there's fatigue, pain, cognitive disruptions, sleep problems.... i didn't even get into allergies (food and pollen and all kinds of others) and chemical sensitivities (allergies and sensitivities are quite a big deal, really, but i'll spare you that)... oh, and last but not least: discrimination! some people (sadly, even doctors) think fibromyalgia is not real, that fibromyalgics are hysterical, dramatic, hypochondriacs, or just neurotic. "how can they- especially the doctors- think that when you say there are scientific studies that prove it's existence!?" you ask. BRILLIANT QUESTION! unfortunately, not all doctors keep up on their reading. not all doctors will treat fibromyalgics (subquestion: why!? because it's not really treatable. you can make a patient more comfortable--- sometimes, but it never really goes away. doctors get frustrated by that! um... so do the patients!). doctors and other skeptics think since fibromyalgics look fine, and don't have actual broken things or strained things or even twisty, swollen things that can be seen, palpated (felt), or viewed on an xray or in a bloodtest, then they're making it up or being dramatic. what would we fibromyalgics like ya'll ("YAWL", Bevrs) to do? back us up. if you know someone who has fibro, just ask them a few questions, listen to them. and if you're convinced we're not nuts, then come to our defense if you ever hear someone say fibro is all in someone's head!

HERE'S THE THING...
here's the thing: we are all in pain, we fibromyalgics. but we try not to whine or complain. you wanna know the truth? i've been in pain for years and never ever thought it was abnormal. ('til i got diagnosed. now i feel a little ripped off!) i thought all of you had painful joints and were stiff in the morning and achy after you vaccuumed. really, i did. sure, i had migraines, but so do a lot of people, ditto the IBS and allergies and good gosh- who isn't tired!? i just thought i was a) unlucky enough to have all these things together and b) a wimp who was (internally) a big baby and a whiner. really! i thought i had a low tolerance for pain! why else would i have to sleep for 2 days after helping a friend move? i thought i was a drama queen deep down inside (see, we can even be prejudiced against ourselves!). so i didn't whine out loud or complain. i still try not to, though i am a skosh bitter (i'm only newly diagnosed, that will go away, i swear!). how did i get diagnosed? the fatigue and fibro-fog in my ever increasingly frequent flares drove me almost mad. i was missing work (lots) and really quite frantic. did i ever connect that with the pain? NO. the doc was smart and tested my tender points and lo and behold- fibro. ("tender points???" you ask, "what are they?" NO- DO NOT ASK ANY MORE QUESTIONS OR THIS POST WILL NEVER END! suffice it to say that tender points are a -fallable and non-precise- diagnostic tool for doctors involving "typical" and predictable pain patterns in the bodies of fibromyalgics.)

WHAT'S THIS!? A CONCLUSION!? or .... GOD GOD I THINK SHE'S ALMOST DONE!
so... sorry so wordy. but there's what fibro is. or really, there's the tip of the iceburg, believe it or not.

thanks for reading it (or skimming it, or pretending you read it!). it's kinda therapeutic for me to write it all out and think that i'm educating some people about this thing i never understood but knew intimately all along.

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