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story, and a few tid bits of information: Written in
2000, with updates
This page, is what began the entire website: its the orginal draft you might say, but none the less, it lays out, with all the personal details, my personal life story.
The title of this page is " the unbelieved " this is not a joke...
From the doctor on the SSI board, who turned me down yet again, to 3/4s of the doctors I have had since this menace first came up in my life...all think the same thing ... that it's not real it's all in your head and so on and so on..........ad nausum. ( Note, I have finally gotten my SSI in 2010, almost ten years after I applied the first time )
Well I am living proof that is VERY real...read on and if any of this fits you to a T then get prepared to take care of it yourself, as most of the medical community will not help you much, if at all, sad but true.
I pray to the Gods this does NOT fit you in any way, and to answer the question why should you care? If you are one of the "one in four " women this year alone who will come down with this, knowledge is your best defense, as most of the medical community will not help you. ( yes I know I just said that...but it bears repeating... ) if they will even admit that what you have is real ... For years I thought I was nuts, as my doctors kept telling me I was fine.
" oh yeah ... then why do I feel like I have been run over by a truck..!? "
Be prepared for some serious words, not a lot of style, but plenty of passion.
these are just my personal experiences, and in no way should be used
a Diagnosis. Warning, blunt language ahead.
FM as its known for short, effects mainly women, ages 30-40 and up...there are men who have it and the youngest person known to be affected with it, was four years old at diagnosis. It is commonly seen as a secondary to osteo and/or rheumatoid arthritis, as well as other conditions. But these conditions are not needed to have a diagnosis of FM...it can be a stand alone disorder.
for the Medical definitions
really mean in terms of your quality of life
whining here ... despite how this is gonna sound...
This is REALLY
yet?... good... :)
Wide spread pain in every joint and muscle you have for no good reason... no matter if you have been active or not ... but it's worse if you have been...which tends to lead one to do little..which leads to more stiffness, way beyond the norm for a person with arthritis to the point, where things just don't work some days.
Legs that wont hold you to stand up, if you have been sitting for more than 20 minutes.
a whole host of gastrointestinal problems, more on that later.
Can't sleep ( it's 3 am as I write this and that's normal for me..)
I won't get to sleep until the body literally knocks the feet out from under me. You don't GO to sleep, you pass out when the body just can't go anymore.
I AM tired, but to lay down would do me little good, staring at the ceiling in a darkened room, while you try and convince the body to shut down gets VERY old after a while. You get 4 hours sleep out of 24 and that not all at once, and never feel like you rested at all.
sleep the point where the body rebuilds, the chemistry of the brain
let you get there, and if you do, it won't let you stay there.
Dealing with a person with a chronic sleep disorder
We have some long standing social mores that say if you are still in bed when everybody else is up, you must be lazy, no matter that you have good reason for it. But, unlike others with an accepted aliment, most people don't think that we with FM, have good reasons.
Which leads to comments of "Hey lazy bones" or other sarcasm, when you get up at noon or later from family, friends and the world at large. Never mind the fact you got to sleep at dawn.
One of the main reasons for this, is that most people seem to think ( as well as most doctors ) that all you have to do is get your bio rhythms turned back around and everything would be just dandy. It does not matter how much proof there is to the contrary, the refrain is always the same... if you would just......
As that's how it is... for most people. Insomnia is a temporary state, like jet lag, that is curable... Heck you can buy meds for it over the counter, that's how simple most people tend to think occasional insomnia is. This is not the case for those with FM.
No amount of making yourself go to bed at 10 PM every night and force yourself up at 7 am, to "establish" a sleep pattern is going to help a bit, other than to increase pain.
I know, I've done it, repeatedly. Sleeping pills only work for short periods of time, and even with that enforced sleep, the body goes right back to "Up all night" the second the meds are withdrawn. Insomnia for us is chronic, as the neurochemistry that allows one TO sleep, has been seriously disrupted.
No person with FM chooses this state of affairs, it's something that happens to them, like a train wreak, every night of their life, I cannot count the number of nights I have lain in bed and begged for rest. Just one night of decent, unbroken, restful sleep.
As all it takes is the dog barking, a train whistle, turn over in your sleep and the pain of your joints jolts you our of your doze and your awake again, for another hour or so, finally fall back asleep, only to be jolted out again. This happens over and over. You spend your nights tossing like a top, in pain, up and down like a yo yo, until your eyes so tired they are weeping, and blurred so ...
I want to hear, when I drag my still tired, stiff and aching body outta
bed, after I finally passed out for a few hours, is "Good morning lazy
bones" .. this is beyond uncalled for.
A small peek into what is almost every morning of my life
You crack open your eyes and the first thing you notice when you try and move, is that you hurt. Most of the time, since your bodies homeostasis is shot, you have spent that last hour before you awake, sweating, no matter what the temperature is in the air. Which means your body is now damp and cold. So you wake up and now your chilled, which kicks off all the joints into pain. Since your muscles have not moved in sleep, the MPS and FM points will flare into pain, the moment you try and move.
The first move of the day can mean a wince, to an out right cry out in pain, and since your chilled too, your shivering. So you try and sit up, now your stomach, which has been merrily building up acid all night kicks in the second you try this, often to the point where it forces you to lay right back down because of the acid reflux.
Not to mention, that to sit up too fast will make you literally dizzy. So you sit up in stages, otherwise you are libel to throw up. Half an hour or so later, of sitting up in stages, you are now sitting up, huddled into your blankets, because you are still cold.
Now you have several choices ... you can either go and get a hot shower, which will help, but such action has its own problems. As it means you have to bend and stoop to undress, climb over the tub rail to get in, raise your hands to wash your hair, lower the body to wash your feet. Which you avoid doing as you are so nauseous at this point, that to lean over means you feel like your about to throw up. And occasionally, you do. There's nothing in your stomach but acid, so you get a badly burned throat and nasal passages, when this happens.
Ladies, any of you who have had children recognize this state, it's called morning sickness. Now picture that every morning of your life and you have a good idea of what a person with FM, lives with.
If you opt for the shower, you have to dry off quickly, or get chilled again, so that by the time you finish drying off, you are panting and out of breath. But now you have to dry your hair, as you do not dare run around with a wet head, as you will just get chilled again if you do. Which trashes any benefit your arms, shoulders, neck may have gotten from the warm water.
Most days you just skip the shower, as to do so means you have to rest by the time your done. You just bundle up until you are warm.
No matter if you take the shower or not, you now jump right back into the thermal underwear you were wearing when you went to bed, as unless it's summer, as your almost always cold. You make sure you have on socks and might even put on a hat to keep body heat.
So now you toddle off to the kitchen, since you have just sweated off a good deal of water, your very thirsty. You don't even think about eating, the very idea of food makes you blanch, so you don't even consider it. You notice the smells in the kitchen, which makes you even more nauseous.
By the time you get your drink, you are tired and need to rest, you are literally breathing hard. But you know you need to move... so you lightly stretch and try and work out all the muscles. By the time you do that ... now you really have to sit down, and all of this ... is due to just the act of GETTING UP !
You finally give up on the idea of the acid, which is not going away and either drink some of the liquid chalk you find in most antacid bottles or chew up a few dry tablets in lieu of any food. then you get to spend the next hour or so belching, as excess gas is about half of your stomachs trouble. Your mouth feels like you have been chewing on pennies all night, with a coppery taste that never really goes away.
Welcome to my morning :)
Now just to top it off, a really short look into my day after all that
Now, on to your day, for me it means in front of the computer, as that's my job now, since I had to give up other trades. By the time I sit down in front of it however, my arms and shoulders already hurt and my hands don't work well. I am trying hard to ignore the fire that's in my stomach and just pay attention to what's in front of me.
It can take me the better part of several hours just to answer my email. Why ? Because anything they require me to do, generally I do right now, so I don't forget about it, since the short term memory is gone. Meaning for me, anything that needs to be done ... gets done, right after I read the email.
Unless it's more than I can handle at that moment, in which case it has to go on my little pop up and bug me reminder program. And if I do not put on that program, they may as well have not asked me, as it went past my eyes, and right past the brain. So I save all letters and hope that I remember them.
Now all of this is lots and lots of repetitive moves by the hands. The hands I have to stop and massage every half hour. The ones that if I don't do that, just flat stop responding. I tell them type and the hand sits there, to where I have to deliberately think about moving the fingers. After a few hours of this, I am really tired now, my hands are numb, my shoulders hurt, my eyes are blurred, my back and legs ache, I normally have a headache.
My tail bone is all but rubbed raw from how often I have to lean into the screen in order to see clearly or shift position due to the bodies pains. Despite all you try to do, the bio mechanics ( on site link ) of how you sit etc. is decided by your bodies demands, not what you know to be good posture.
You fight a forever war with the body of what is "good posturing", VS the odd and contorted positions in which you find yourself ... as the body is trying, HARD to avoid more pain ... so it literally twists and contorts you, which causes more pain for the other muscles, that wind up under stress.
I court bed sores, yes you heard that right, or "pressure sores" as they are more properly called on the tail bone, elbows and heels on a regular basis on account of this. As they take a great deal of pressure just to move the body about. Ask anyone whose wheel chair bound, and they can tell you all about it.
You tend to use the elbows to move the body, as the legs no longer work right. It hurts too much to use them to shift the body, so, like our paraplegic cousins, you drag the bodies weight on the elbows. The tail bone is particularly vulnerable, because you have to have your legs up when seated .. which means that your entire body weight is centered on a very small part of your anatomy, and it protests this treatment, rather loudly. The right chair cushion becomes a serious consideration.
Which adds even more pain to the mix, as now those things hurt too. And you find yourself in even more odd postures, as now your trying to avoid causing those areas more pain. Such things have to be watched with extreme care by the way, as if they ever walk over the line from feeling bruised, painful and irritated, to where the skin actually breaks, then I have a more serious problem on my hands. As I would have a wound, that may not heal.
By the time I reach this point, I have to get up and go lay down a while, read a book maybe. I might even nap if I am lucky, and come back to it a few hours later .. maybe. As the labor I just did, might well be all I'm good for, for the day.
So a few hours of work, just might take me all day to do, for all the breaks I have to take in order to accomplish it at all. And this is assuming mind you, that I don't have an IBS attack going, or a whole host of other possible energy drains, as if so, cut the workability down more, for every other issue I might have going on.
Understand now, and make note: I have yet to eat, so I am doing all this on no fuel whatsoever. Nor will there be any, until much later in the day, when the stomach settles down and allows me to eat.
Now, despite all this, I have a mostly satisfied customer base, for what litte work I can do. They are people who learn quickly that some days I might not be able to do what they want of me, but that I will so so, as soon as I can. Most forgive me for that. But just as many, do not and they never hire me again ( not to mention I am certain they bad mouth me to their friends ). That I cannot meet deadlines, makes any work I do, so hit and miss, as to be non profitable.
I used to make web sites ( can't anymore ) digitally paint artwork ( I still crank out a work now and then, but it takes me months to do even one ) and I have had a wide varity of other hobbies. I cannot call them jobs now, as none of them have ever made me enough money to live on due to their sporatic nature. But, as long as the hands hold out, I will write articles ... I haven't let FM stop me from making at least some over all contribution, even if I can no longer do the jobs I spent many years in collage training for.
But make no mistake, the above is just a small sample of the price I have to pay, in order to do what I can now, with the resources I have left.
You PAY dearly for anytime you have a good day and over do it. ( which we ALL do... the good days don't come often and you try and get all the things done that you had to let slide...) Then often go down for a week or more of pain, paying for that indiscretion. Push and Crash ( on site link )it's called.
You make deals with yourself regarding the housework and any other responsibilities.
You ... who could take care of yourself, and anybody else who came along..
Now we have to choose if we are going to do dishes today, or do the rug.. because often, we can't do both.. ! Energy is finite and has to be rationed out carefully, or there will be none left for the "Gotta Do".. things
You have to get over feeling like some kind of slob on the bad days when your looking at the ring in the tub, or the floor that needs mopping.
out of ( with a stick..doing it with your hand would hurt YOU more..)
who even makes
one comment about the state of your house.
My eyeglass script has changed 6 times in less than 9 years due to MPS ( myofacial pain trigger points ( on site link ) interfering with the ocular muscles
give me bi-focals. I can't wear them, why ? Because, looking down,
just like looking up ... or sideways ... to look in my side mirrors in
the car, I have to turn the whole head, which also hurts, but less than
trying to move my eyes.
Hands that go numb from using the mouse...holding a book...picking up a grandchild.
Vacuuming the rug can mean spending the rest of the afternoon cuddled up with a heating pad, for hands, shoulders, back... ( that same heating pad that lives in your chair..forever )
I can't lay down to sleep but have to be propped up in a EZ chair ( a night in a flat bed is a promise of worse pain, so much so, that to get out of that bed you'd need help ) And adjustable bed might help, but they are far too costly for someone who is unemployed, and no medical coverage will pay for one for our condition. ( Since the date of this pages writing, I have finally found a combination of very costly pillows, that allow me to use a real bed again, as well as, several layers of padding on the bed itself )
Posture gone to hell... due to the need to belly breathe, since your ribs hurt so much you can't even sit upright, much less fill the lungs with air. ( I had a wonderful carriage once and a walk like a mountain lion...Now I am sloped over like the Hunchback of Notre Dame, and walk like Herr Frankenstein )
You sit literally so folded in half, your lower back about breaks from the strain and your breasts are at a permanent slant downward ... This from a woman who never failed the pencil test in her life !
Feet and legs that have to be propped up when you sit down, or they go dead ... and drop you on your face if you forget that fact and try to walk, without making sure they are with the program first. Just to give you a good idea of how bad this is, anytime I have to get on a plane, I have to be carried off, as the enforced legs down posture for hours means that my legs no longer work and wouldn't hold me to try and stand up on them.
Broken toes so often that you don't even go to the doctor anymore for them, from legs that don't listen to the directions the brain gives them and wander off the path and bash into table legs, chairs..walls..etc...
The funky shoes you wear because anything pretty your gonna fall off of because half the time, you can't feel your feet and have little control over where they go. High heels and the like, become a danger, not a fashion statement.
You have given up underwear... and not because you are a feminist ... ( although I AM that. hehehehe..) but because the bra and panties ride right over some major tender points and cause pain.
To get a hug from someone can sometimes mean having to grit your teeth so that they don't notice they just hurt you, doing it. You learn not to shake hands, or let anyone hug you on most days.. as it's painful. Which isolates you. Some days just to touch you, even lightly, is too much.
You see, what is an ow to normals, for those with FM can be OWWWWWWWW! due to excess substance P, a pain receptor in the spine and due changed nerve endings. This hypersensitivity extends to other things as well.
You are extremely sensitive to things like, certain sounds for example, as the body interprets the onslaught of noise, as painful. A fact I only recently learned.
Which means, a sudden loud noise can literally .. hurt. So the kids screaming and hollering, or your neighbor with his boom box blaring as he drives by, is enough to jolt you outta your chair. You wanna grab up the phone and smash it, when it rings and jolts your nervous system. The sudden blare of loud noise on the TV when the commercials come on, is enough to make you clap your hands over your ears and/or turn off the set.
The same sensitivity can happen with smells. You tend to use maskers of scent, as you can smell things that most people wouldn't even notice, for example, you know when the garbage can in the kitchen is starting to sour, long before anyone else does. And lets face facts, there are many things in our world that don't smell that nice, and thos of us with FM will generally notice them much more and a lot faster, than your average person.
Lights: You tend to live in darkened rooms by preference, as bright lights are painful to your eyes. You can't even think of going outside without shades or a hat on, as the pain will drive you right back in the house. This is often due to the fact that your eyes are dry to the point of pain, as MSP points have interfered with your tear ducts. ( Or, they are not draining as they should, and you walk around looking like your weeping all the time, as your eyes are over full )
It's almost always one or the other, normal is seldom is part of the picture. You live with eye drops handy, all the time.
Migraines ( on site link ) from all of the above and the fact that 10 of the 18 tender points, are right there at the neck and shoulders.
Then there's the heart burn so bad from all of the above and what few meds they will LET you have, until you swear you are having a coronary due to the pain.
The flesh of
hands thinning out in places, until your own nails running across them,
enough to cut you, due to Carpal tunnel and Raynauds.
( Not sure if this applies ? Try and hold an ice cube in your bare hand, and if within a moment your hand hurts..cramps and spasms out.. you've got it.. )
All your drinks are encased in foam tubes to protect your hands from the cold, and to give your hands a better grip on it so you don't drop it. You wear old clothes most of the time or what you do have, becomes old fast given how often you spill things on them. Why ? Because the hands don't do what you tell them to do ... you tend to use straws to avoid this ... preferably with sealed lids.
screw lidded, over sized drink cups from many convenience stores,
the only cup you can use safely. Even if, when they full they
can hurt, as
they can be too heavy on the wrist joints.
Mytrol valve pro lapse where the tri valve of the heart gets lazy due to MPS trigger points, and doesn't work quite right, which gives you angina pain, palpitations and scares you to death.
Female issues.. I am an IT due to hysterectomy.. at age 25 ! Had cysts that had destroyed my ovaries, and went thur 40 kinds of hell prior to that ..try painful bleeding for 3 weeks out of 4.. for years, great fun.. NOT! Such female issues are commonplace in women with FM.
You don't eat anything if you have to go somewhere, as the act of eating can set off the explosive diarrhea that comes with IBS... ( or for no good reason at all.. ) This is called a gastrointestinal disorder, which is increased in my case, by not having a gall bladder, ...another little gift ...gallstones... that was nearly my death. In fact it was my death, but the doctors were able to bring me back, I died on the table on them, and was in a coma for days. FM began in earnest from that day forward.
You tend to give up eating away from home all together, due to this. Believe me the first time you get hit with IBS while driving down the road and have to start praying that you can find a bathroom before you soil yourself, or throw up, you learn not to eat unless you are at home ! For the last three years that I was still able to work, I starved every day I was at work to avoid this. Ditto with going to class. I got real tired of missing my classes ... just for the fact that I had lunch.
You change your diet repeatedly, in the hope you can find something that won't make you pay for the sin of eating... sometimes for the whole damn day...in the bathroom.. cramping... shaking.. sweating... and often throwing up, while your system empties itself. Irregardless if the body is finished with it or not, so what little you are able to eat does you little good and the body degenerates more, for lack of food...You walk around hungry all the time.
Sometimes you get lucky and find that you are intolerant of some food or other, like Gluten, and it is causing part of the problem and eliminating that, will ease it. However, most of us aren't this lucky.
You can easily get to the point where you hate the thought of eating until you can't take it anymore, and pray for peace after dinner time ( if it even lets you finish your dinner before it starts up...) Then you curse at empty air, for the price you have to pay for the crime of eating one meal a day...if that.
( You fast
than you feed, which is the worst thing you can do, but you can't
make yourself do anything else..) And then, to top it all off, you have
to listen to well meaning family members who insist you eat more ! As
don't understand why you don't.
Some Doctors who treat this, will try and tell you that it has no long term effects, that it's "just" a motility problem, uh huh ... You might live as long as the next person true, but don't even attempt to tell me that my body dumping out waste matter before it's finished processing it, is not doing anything bad to my body.
If for no other reason than the severe dehydration it creates, electrolytes that have gone to hell, hemorrhoidal irritation and so forth that comes with any diarrhea episode. If it were not so, then why do we take such great care when it happens in an infant or the elderly ? As unchecked with either of these groups and it can literally kill them. So pay no heed to any doctor who tries to tell you ... this is no big deal. Or worse, tries to tell you, it's all your fault, if you would just relax and stop stressing, you would be fine.
Never mind, that after a day with making a bee line to the bathroom every half an hour, you feel like you have been in hand to hand combat all day ... you have, from the inside. Until you literally shake with exhaustion and feel like someone's been using your gut for a punching bag. This is not something any sane person would wish on themselves ... period.
Note: In people with FM the reason the gut goes spastic like this, is, it's a soft muscle and like any other muscle in your body, it is subject to the same knots, nodes and other interference of neurochemistry due to FM. The gut is covered in fascia, which is effected by MPS issues.
You can be perfectly calm, and still have it happen, so stress is only a small factor. Do not let some doctor heap it all on your head, that this is your fault. It isn't.
Needless to say your body, is chronically short on needed nutrients and vitamins. A person with FM needs more of such things than a normal person does, just to get by, much less to improve or repair the damage don. But due to the conditions, the body seldom gets it. So taking vitamins or other supplements, is not at all unwise. Natural ones by preference.
Then there's the other way, where NOTHING happens in that dept. ... for weeks ... and your bloated out like a whale, and you are being asked questions like " when is the baby due?" due to how extended the gut can be at this point. A hard mass of unrelenting pain, and of course the wondrous entertainment of mass amounts of Gas, let's not forget that. We wont even talk about the effects of auto intoxication this situation creates. Doing almost anything to get things moving again.
The day when
bowels move in a normal manner, you want to take a picture of it, so
can remember what that looks like over the next year or so. Because
how long it will be, before you see that again. But to many doctors,
is just a "motility problem" and not worthy of much concern or care on
You age 3 years for every one you live.
There is no
of official information will tell you this, but anyone with FM knows it
to be true,
Now...I could tell em I was 75 and they would believe me, due to the aging effect of being in constant pain and the bodies degeneration.
And last but not least the Fog, where the brain you have depended on your whole life, just took a hike..
It's not just the things you don't remember, it's weirdness like being at the store. For example:
Look at the cash register for the total, but by the time you look down to your checkbook, you have forgotten what the total was and you can do this over and over, in a row..it makes no difference how often you look at it.. it's just gone by the time you look down.
Or when you forget who said what:
I can't remember the conversations, and I wind up telling someone " didn't I tell you ..?" when they are not who I had the conversation with to start with. They look at you like you lost your marbles...and you can mix up who said what in the same conversation.
You send neat jokes and pics to friends as new.. when they are the ones who sent it to you .... but you have forgotten that and ya wanna make them an EX friend, if they embarrass you by telling you that !
Or swear you told a loved one about a phone call, or appointment or whatever and they look at you like your nuts, because you didn't.. and you literally can't remember for certain, if you did or not.
And you pray you don't forget something really important, like your own children's birthdays for example, or worse, your own. I have done that, believe it or not.
Without my little computer program that pops up to remind me things, I don't even know what day of the week it is, much less the date. And looking at the calendar does nothing, other than to irritate me.
My eldest Grandchild tried to take advantage of this once. She tried to tell me it was Saturday... when it was Tuesday, so she could get out of going to school ... She knew that Grammy had no idea what day it was.
Just as an
it didn't work, I called the school ... they thought I was a little
I am sure, calling to ask if there was school today, but hey, it
on a battle of wits, to a six year old !
You end up doing most things, that are important, right now so there is no chance to forget them. But that's not always possible and because it's not, you risk forgetting it. My little reminder program is set to literally bug me on almost anything I need to do.
And I have to remember to make that reminder...NOW... when there's anything that I have to do later, or I will forget to put on the reminder too. If the reminder does not go on ... the moment you tell me something ... you may as well have not spoken, as it just went in one ear and out the other and didn't even stop for a coffee break. I even have a little recorder on my key chain my mother got me ... for remembering what I am going to the store for, in case I forget on the drive there.
You have CRS big time in other words ( can't remember sh*t, for those of you who never saw that one before ) Your short term memory is short circuited.
This one is real hard .. especially on other people. You get " the look " when you mess up and forget something...people just don't understand that you DON'T remember...Period ! They seem to think this means you feel what they said to you, is unimportant :( No matter how many times you tell them, you don't remember details anymore, unless they are repeated over and over.
My little computer program pops up to remind me for everything ... from what day to take out the trash... to get the mail ... to go pick up the grandchild from school ... hell, to know what day of the week it is, and most certainly any appointments. Notice, we are talking some things you do everyday ... not just novel information, although new information is more likely to get dropped out ... but even for "routine" things, it cannot be assumed it will be recalled.
This from a person who used to used to carry a day timer, just as a handy thing to pull paper from to leave notes for other people.. :)
remember where it
was ... much less write in it ... and if
I did write in it ... I would forget to look in it !!!
Mind you, I am a college graduate, who maintained a 4.0 average for most of my schooling, which I did as an adult, not a teenager, so we are not talking that long ago. With an IQ of 142, at last testing, as to how that works out for intellect, I will leave to your own thoughts, but I am hardly what any objective testing, would call less than mentally endowed.
We are talking about the fact my brains neurochemistry has changed due to this crud and it effects all manner of things, not the least of which is my short term memory. Having to quit school was only the first thing that FM forced me to give up.
Your short term memory is always posted somewhere else, because it no longer works in your head ... your world is full of post it notes.
You are forever telling people, If I fail to do.. what ever it is they are asking for.. remind me ! Some do.. most don't... and look at you like your stupid when you fail to recall what it was they asked for.. sigh... :(
Then there's the really " BAD" days we call a flare, when the weather shifts or you have over done it, or for no reason at all that you can figure, and you can literally do nothing, because of the pain. But sit and cuddle up to your ever present heating pad and Pray that if your going to die, you wish to the Gods it would hurry up. And this state can go on for weeks.......
Sure plays merry hell with ones ability to work a 9 to 5 job.....wouldn't ya say... ?
I get this
from other wise well meaning folk, especially after a few good days
I was able to get some things done.
"Why don't you go back to work ?"
Understand that we with FM CAN do most anything ...Once
Just do NOT expect us to be able to do it day after day.. it's not gonna happen and that consistency is what you need to do most any normal job.. you have to be able to show up, everyday, on time etc. etc. and that is NOT going to happen for most people with FM.
As today, yes, we might be able to do a thing, tomorrow however, we might not be able to do anything. And the thing we did today, we are liable to have to pay for in pain tomorrow.
Yet, what is typical, is you are made to feel guilty over this, as you get told "well you could do that yesterday, so why can't you do it today ?"
day to day, hour to hour and that's just a fact we FMers learn to
Suffering without recourse during a flare
And these are the times you really curse your doctor, if you have one, because he/she most often, most often won't give you any REAL painkillers for all this. If I see another bottle of horse pill sized Ifvuproven, I will just scream, as this is a favorite of doctors. To give you large bottles of non steroidal anti inflamlitories and have the nerve to call them "pain killers", just because they are the size of Texas ! It happens I live in Texas now, so I know how big that is :)
But, you end up taking large doses of them, since it's all you have. Until you wise up and realize that you are just doing yourself an injury, with a bleeding stomach and potential liver damage, and stop taking them. What is worse, despite all the risks, they generally don't help much, if at all, with the pain.
As a note FM is Not an inflammatory condition, so such meds are nearly worthless.
Not even for the BAD days will they give you anything narcotic in most cases, because they are afraid you will abuse them..!!!
When I take pain killers I get to move like Normal person :) at least for a few hours.
I start walking and feeling like normal again or at least as close to it, as to make no difference...
Still can't push it...PKs don't do anything for all the other issues...But I can move without too much pain, Hell if to just to sit and watch TV, Web surf, read a book without hurting every time I shift positions, would be nice.
If that's Abuse...then abuse me Honey...
em when you don't need them, and you need them nearly everyday with FM
I never have figured out how that's supposed to make any kind of sense...
( FYI..people who have real pain, don't get high off of pain killers ... if they make you high... you don't need them or you have been given too much.. I have been given the strongest PKs out there, say for migraine, in doses that would fell an Ox. And after a 10 minute adjust to it, could and have driven myself home... sober as a tee-totaler, but blessedly free from pain for a little while... )
Which to a doctor, means your addicted to them.. Bull pucky! It means your pain levels are high enough to where you really do need the medication .. and that's all it means. ( Besides which, given as 99% of doctors, will not give you any pain meds for FM, I ask the obvious question of ... how on earth could I possibly be addicted to them ? )
I know people with FM who have had major surgery done, who save most of the pain killers the doctor will give them at that time, for when they really need them, for their FM pain... Think about that for a moment, the pain of major surgery is less than FM pain. Does this not tell you something of the kind of pain I am talking about here ?
Then there's the joys of... nerves that are shot, panicky for nothing. One day you are unable to get a rise outta me with dynamite, as I just don't give a damn.
The next day I am screaming at the kids, for being just kids, just like they where yesterday, when I didn't care, and I just wanna pack my bags and leave home.
I've gone through two mates due to this crud, no big surprise there...sad..but not surprising, as it takes a hell of person to really live the vow of, " in sickness and in health"...as generally speaking ... When major illness walks in the door...the relationship often walks out.
Is it any
a on-line FM friend of mine...committed suicide with Dr. Death
she was 27 years old !
Shocked yet...?... Appalled...? Don't believe it...?
Is this you ? ( I pray none of you said yes to that...) If you did... see a doctor.
But what will you get when you try and tell a doctor all this ?
Most of it will be unsaid, as there is not enough time to get out the things that are bugging you the worst..much less all of it, in the grandiose 15 minutes the doctor gives you of his/her time ... so ... They will tell you to try the treatments as noted in the medical facts. ( on site link )
( FYI... One trick to get them to at least be informed of ALL the issues, is to keep a logbook.. of it all.. and make sure that copies are given to the doc as updates every time you see them... even if they don't read them.. they are part of your record... they have to be.... by Law.
So if they don't listen, maybe your next doctor will, after you fire this one for their failure to listen to you.
Did you notice in the first basic facts...they put all the effort for "treatment " in the lap of the person... and most every one of the "treatments" you may read will all say the same thing... Why ? ... Because they can't deal with what they think can't hope to cure and very often, don't understand.
This disease does not show up in most blood work, there is no X-ray that will show them anything. Only a pressure test at the tender points and a history, which has repeatable concomitants, that and eliminating anything else it might be. Thyroid issues being one of the major ones.
there is finally a test for FM ... APA
There are a GREAT many doctors out there that flat refuse to believe, that it is anything but the "disease of the week", with no real basis in fact... and you can talk yourself blue in the face, trying to convince them.
Some will not even attempt to treat you, once they learn of this diagnosis ... This is supposed to be against their ethics ... but ask anyone who has chronic issues and you will hear the same tale... We are too much bother to treat as the doctor cannot "cure" us, so we are people they don't wanna bother with.
Desert Storm did us a favor however with regards to many Doctors opinions that FM is just a "diagnoses of exclusion" which I got told at my last SSI hearing, by the supposed "expert" .... nice guy huh ? Or a " wastebasket" DX for doctors to tell the client, when they can't figure out what's wrong.
Many of the Vets came home with, Desert Storm syndrome, which is like FM in many many respects... with only one difference...DSS can kill.!
http://www.gulflink.osd.mil/vet_help/med_research/med_research.jsp for more info on this issue.
These where prime condition Vets, going to their doctors with the same complaints as any FM client and got the same result as we do at first, " there's nothing wrong with you." ...until they started dying of it...
( Note: Fm has caused NO known fatalities to date..)
The DS Vets where exposed to toxic chemicals and this is believed by most to be the direct cause of their medical problems.
of a resurgence of study into FM due to the similarity and a great many
things where discovered about it, except the cause. The Vets, like us,
are still fighting a battle for belief, but their fight is a lot closer
to over than ours. However, back to the information, they did find
and many believe we will see more of FM as our environment becomes more
toxic. This does not surprise me at all.
But, this information has NOT made it down to the local level and your average doc on the street. He or She, is still operating with the definition they were given in Med school.. a " five minute lecture that mentioned it and classed it as a soma form disorder" which translates into " it's all in your head".. which we with FM, have heard our doctors say, since day one.
Over 25 years ago the America Medical Association came out and said that Fibromyalgia is a REAL disease of unknown etiology, which anit no big thing, there are a great many things that they don't know what causes them, but they don't treat them as unreal, because of that.
FM is in good company really... Migraines... Ulcers ... PMS .. Period pain, Diabetes ... and TB... were ALL called Soma form disorders at one time
Try telling that to most doctors and they will look at you, like you lost your mind.. but it's very much true and quick glance at any medical history book, will prove it.
However, most currently "practicing" doctors haven't read a medical journal since they left their internships and are way behind in the recent details. They don't have time to read a ton of paperwork on every subject in the book and so become obsolete in their practice, almost before they start. On " known" issues this poses little issue, the cause is known, the treatments are known, etc. etc..
( Every doctor KNOWS this to be true but only one in 100 will admit it and even fewer will do anything about it when confronted with something they know themselves to be out of date on, some do and I bless them for their care of their clients )
If you notice, this known sort of thing, your doctor will happily treat. But bring up anything that has recently ( read the last 10 or so years ) been studied and new ideas and treatments are available, and they are lost and often downright hostile when you try and tell them that.
( The doctor as GOD syndrome )
For FM, they will try all the accepted treatments, anti-depressants in small amounts to " help you get to sleep" maybe... if your lucky... some muscle relaxants, something to treat the heartburn.. ( most of which you can get OTC now, so they likely wouldn't even give you that..) some anit spasmodics to help with the irritable bowel syndrome maybe and tell you to get some exercise.
YEAH RIGHT ! On a good day I feel like I have the flu, and you want me to work out...HA!
I have done them all, over and over, and tried one med after another to the point were I should have rattled as I walked, I took so many pills. And without fail, each and everyone of the "accepted" treatments, either failed outright or, failed due to acclimation. Meaning the dosages had to be increased in short order, which leads to its own problems.
It does little good for example, to take enough meds to force the body to sleep at night, if in the morning, you have a medication hang over, and are more mentally disoriented than before, and have heart burn so bad from the other meds, you think someone lit a fire in there.
point of diminishing returns to where what little good you get from the
medication, is more than counter balanced by the side effects, that
just one more problem and source of pain.
And to top it all off, most of the meds they want to give you as treatments, often make many of the problems we have worse, example: the antidepressants, are well known for causing :
Urinary retention, Blurred
vision, Constipation, Sedation (
which is the effect they are giving it to you for )
It doesn't take a genius to see that yeah, the anti depressants might help you sleep, but the side effects can exacerbate problems we already have in abundance. So their worth over all, is questionable. Oh, and one of the most common side effects, the weight gain, of what was the commonly prescribed, amitriptyline, is due to the fact it creates an overwhelming desire for sweets. A fact any doctor knows, but often doesn't bother telling you about.
If you are not aware the meds are the reason behind this sudden drive to eat sweets, you can literally eat your way into many excess lbs. And then are made to feel guilty because you gained weight.! So the possible balancing you might get of the neurochemistry that's outta whack, can be easily over ridden by the side effects of the medication that is being given to treat it.
Others, you may be given for other problems, such as arthritis, which is typical to have as a primary with FM. The meds given for that, may cause no change in eating habits, but can cause major changes in metabolism.
With one medication, a steroid in this case, I gained over 40 lbs in a matter of the few mts I was on the medication. I had not changed my diet at all, no cravings, no excess intake.
When I complained to my doctor of this sudden gain, which to me was nothing short of alarming, his answer was "Oh ... sorry about that, Prednisone does tend to do that".
Needless to say I fired him that day, as he knew the medication he had given me could cause this effect, and didn't think it was worth telling me this risk factor before I started the medication. He told me of others, but not this, it wasn't worth mentioning I guess that my already over burdened joints and muscles, were about to be majorly stressed by excess weight. Weight gains I had no way to control, as it was not at all related to my diet.
That's how much of a metabolic change this stuff creates. It has it's place, but the docs failure in this case was that he didn't tell me what it would do, and how it would drastically effect the body.
Let me put it this way, I gained so much weight, in so short a time, that my own daughter didn't recognize me, when she got off the plane to come and visit me. That's how much it changed me, and it took major work on my part, to get rid of it.
I have learned since then, that others, who have been under such treatment for far longer than I was, that the metabolic change, and the resultant weight gain, can be permanent, if taken for long periods.
Oh, and just in case you were wondering, the benefits of this, lasted maybe the first week, after that no further help for the problem and joint pain it was given for, increasing other side effects, and as noted, all but trashed my already fragile metabolic system. I kept at it for so long, as I was told at the onset, I needed to be on it for at least 3 mts to get maximum benefit. Some benefits huh ? :(
So be aware,
do the research on any new med they try and hand you, no matter what
are treating, before you commit yourself to them. Ask questions and
them give you honest answers.
The drink is SODA POP.... grow up !
Caffeine and nicotine are fake energy givers, but some days they are all I have
Now the sad thing is...most people with FM are like I was...TYPE A all the way... very fit, active people.
I was Dancer by trade for 14 years... waitress...business woman... professional with degrees, who was damn good at very demanding work ( I worked with " persons with disabilities.." now anit that a kick ) sometimes all at once.., College student..with full time job...kids to raise...husband.. the works... I did it all with gusto... I was a body builder before It became a FAD... I had a body like a rock...and the stamina to match.
A doctor told me once that I didn't deserve the heart I had after an exam, and she based this on what she saw ... an out of shape...middle aged woman, who smokes...it never occurred to her that I have such a good heart, due to a HELL of a lot more work than she will EVER see.
And within 6 years I lost all that...my stamina...my rock hard body... my looks ... the sharpness of my mind ... all of which, I would have lost anyway in the normal course of events...unless I worked real hard to maintain it... but to lose it at my age is the tragedy.. it's why I call myself OLD ( much to my sister's disgust..as they are both older than I..) but it makes it easier to deal with, if I think of it as an effect of aging, it doesn't upset me so much then.
And to make matters worse, we are very good at hiding our pain. We learn fast that everyone will go outta their way to help for acute aliments. Get a nasty cold, or break a leg, and everybody's tripping over themselves to help you, until ya get better.
However, if what you have goes on, day after day after day, and is never going away, such help, or even consideration goes out the window in a very short time. Any mention of it just makes people hostile, or they think all you want is attention, as they can't see what hurts, there is no wound to show, no fever to validate it. So you learn to hide it and keep it to yourself.
Which backfires of course, as if you get real good at hiding it, people, all the way down to your doctor, REALLY think you are fine and are just trying to BS them when you say your not.
It's a case of damned if you do and damned if you don't.
Well have I totally depressed you yet...?
Bored the hell out you...?
Scared you spittless... ?
I hope by baring my inner secrets like this I have made you think, about yourself.. if any of this fits you to any degree, or loved ones of whom you wonder, what's up with them...? I hope I have scared you just enough to consider that you, or a family member, could easily be the one in four that will come down with this and to understand some basic facts ...
They are not
old..despite what I said.. that's a mental fiction for me... but they
and deserve your help... don't make them fight that fight alone..
As it's a beetch... you see we look "normal" to most peoples eyes, which is a laugh, but most of the time we just look tired ( no duh, we are ) but it's hard to reconcile that so called normal view, with the fact that we are desperately ill. And since most of us were type A's. We are used to doing for ourselves and anybody else while we were at it... and suddenly we have to ask for help, and that comes hard.
Now I have informed you in a nice concise manner, on the medical facts and one full of passion and pain, here in my personal story ... And if I have made you think ... and consider yours, or a loved ones state by doing so ... then my purpose and pains, will have been time well spent.
Because If I had known then...what I know now...
I would have
better armed to deal with my doctors...
That I was just a hypochondriac ( on site link ) who was looking for attention, with all the hospital trips for migraines... with the upset stomach after dinner... and a million other things that taken one at a time... meant little and don't add up to anything, but all together mean a whole lot... and
It has a Name...which was a glorious thing to hear, because it meant that I was NOT imaging it.
I was NOT a whiner, who just wanted people to feel sorry for me.
I was damn near to the point of believing that crap ... the fact that I felt just as bad, no matter if anyone was around to see me or not, didn't seem to matter to anyone but me ... and I gave up even trying to explain that.
That I was NOT gonna die from how bad I felt ... Thank the Gods, what a burden that lifted ... Ok they couldn't do much to help ... and still can't, but I know what is wrong and can work on helping myself.
Knowledge ... that is what I offer you here..Knowledge that may spare some fellow being the pain and misery I have suffered and continue to suffer, with the right care ... it could be different ... and I make myself keep going in the hope of that day.
That is what
that this feeling had a name gave me..hope... that someday someone
figure out why and be able to cure it, or at least make a better
to life... and in the meantime, I do all that I can to make life
and sometimes even joyful.
and may all the fates be kind and winds sweep the stones from your path....
you for your kind attention and I pray that this missive of mine,
Goddess Blessings to one and all