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
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 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.
Note: these are just my personal experiences, and in no way should be
for a Diagnosis. This page will be updated often, so if you have been
before, do make a point to scan it again, as I have likely added things.
at least 11 of 18 know
tender points ( points of pain at easily identifiable points around the
body, see list below ) for longer than 3 Mts. bilaterally
( which means on both sides
of the body )
This is a much nicer image than the plain ole medical model..:) ( And since I don't have the endurance to type that long. I will give you the first set of basics by paste and click...the following is not under copyright and I make no infringement. ( anything in blue are my add-ons ) Anything in Pink are the things to note.
The Fibromyalgia syndrome (FMS) is a chronic pain condition, usually accompanied by ongoing periods of exhaustion. Most people with Fibromyalgia have additional health problems that affect various functions in mind and body, and many also have disease of the immune system such as rheumatoid arthritis, lupus, and Sjogren's syndrome.
The symptoms of Fibromyalgia may be mild to severe. A mild case is merely a nuisance. With a severe case, a person is often unable to hold down a paying job, and may find it hard to maintain the home or even to enjoy the company of friends and family.
However, Fibromyalgia itself causes no detectable damage to tissues or organs in the body.
on this issue, apparently it does cause damage,
the muscles and tendons over time take on
a moth eaten appearance from cellular damage, that does not repair well
and tends to leave scar tissue.
Just that ya wanted to hear..! Not !
People with Fibromyalgia hurt all over. That is, they feel wide spread pain - in arms, legs, back, chest, hands, feet and even cheekbones and jaw. No one knows what causes this pain, although studies have found a high level of substance P, a pain transmitter, in the spinal fluid of people who have the condition, as well as low levels of serotonin, a chemical that moderates pain.
The pain tends to get worse in the parts of the body that are used the most, and some early research concludes that muscles may lack sufficient oxygen or have a lowered ability to use oxygen as fuel.
Fibromyalgia often occurs with chronic myofascial (my-oh-fass-shall) pain (CMP), which is a neuromuscular chronic pain condition with TrPs that can cause muscle weakness and dysfunction, and incapacitating, intolerable pain. TrPs can also cause extreme dizziness, migraines, buckling knee, clumsiness and calf cramps. Pains in localized parts of the body––the back, hands, neck and other areas, are a symptom of TrPs. Achy, body-wide pain is a symptom of FMS, but all widespread pain is not FMS. TrPs can occur all over the body in CMP, for example, causing widespread pain. FMS will amplify the pain of TrPs. "TrPs= trigger points"
TrPs are incredibly painful areas that often feel like knots, hard lumps, or taut bands of fibers in the muscles, and they can be everywhere, and often refer pain to some other part of the body. They can cause irritable bowel syndrome, dizziness and loss of balance, buckling ankles and knees, pelvic pain, painful intercourse in women, impotence in men, and many more symptoms. The tightened and rigid myofascial surrounding the muscles can entrap nerves, blood vessels, and ducts.TrPs can cause blurring of the eyes, double vision, leg cramps, trouble swallowing, sciatica, numbness or tingling. Carpal Tunnel Syndrome, Migraines, TMJD, Piriformis Syndrome, and Thoracic Outlet Syndrome are some of the conditions that can be caused by TrPs. Muscles contracted by TrPs can pull bones out of alignment, and lead to osteoarthritis.
Other studies have shown a sleep disorder in the majority of FMS patients tested. This disorder consists of constant interruptions of the deep, slow wave sleep needed for rest and restoration of tissue. It is a likely cause of the profound fatigue that is usual in Fibromyalgia.
Stiffness amounting to more pain is also a common experience. Some people with FMS cannot sit or maintain any other position for longer than twenty minutes without becoming stiff, and morning stiffness can take an hour or more to wear off.
It is worth noting that psychiatric conditions such as depression are not more common in FMS patients than in the general population.
Other Health Problems
Adverse health conditions that often go along with Fibromyalgia mean a range of problems from skin to nerves to digestion. Physical conditions include irritable bowel syndrome, numbness and tingling in hands and feet, numbness , migraine and ordinary headaches, itching skin, dizziness and blurring of vision, muscle spasms, sore throats and tender lymph nodes, as well as sensitivity to the weather and pollutants of many kinds.
Mental and emotional problems include memory blanks, word mix-ups, confusion, trouble concentrating and panic attacks.
Many of the symptoms of Fibromyalgia can be found in other conditions as well. Therefore a diagnosis of Fibromyalgia starts with taking a patient's medical history and prescribing laboratory tests in order to rule out these other conditions as the cause of the symptoms.
Fibromyalgia is then diagnosed by two criteria: widespread pain for at least three months, and a number of tender points found in precise locations on the body. This particular pattern of tender points occurs only in FMS.
Treatment of Fibromyalgia is aimed at alleviating its symptoms. Medications are prescribed to improve sleep and reduce pain. Exercise, tailored to individual ability, has been found to improve many symptoms. ( this is way over rated..as most of us are not able to do enough exercise to do much good, without serious pain management support, which we are habitually denied by most of the medical profession..)
that provide neck
support while sleeping can help avoid pain emanating from neck and
Massage, heat and rest will often relieve pain temporarily. And stress
management, including counseling, biofeedback and relaxation
is often beneficial.
( some help...but more needs to be and can be done... don't let em short you with Just this...what did I say you are own your own... unless you get lucky and get a doctor that really understands.. and if you don't have one ... you make one, by training the one you have...they wont like it.. but it can be done..)
Prevalence and Outlook
Fibromyalgia is estimated to affect 2 - 5 percent of the population. The ratio of women to men is 10:1, although more men are now being diagnosed with the condition. Children and young people who have FMS are often mistakenly diagnosed as having growing pains or behavioral problems. ( I was diagnosed with growing pains as a child...I remember having to stand up in class as it hurt too much to bend my legs for almost an entire year..)
Fibromyalgia is not a new condition. What is new is the vast number of people who are sidelined by its symptoms. As this debilitating syndrome becomes more widely recognized, thousands more people are being diagnosed every week.
is a complex condition
that can be triggered by a number of factors such as a fall
or auto accident, childbirth or hysterectomy, or often, a viral
suggesting a genetic predisposition. ( it
lays in wait...until there is a major trauma to the body...and attacks
while the system is weak...I started mine I believe, after a major car
wreak at 14... and got it for real after Gallbladder surgery.. at
took many years to become full blown)
With research going on into its many aspects, it is likely that more effective treatment will soon be found, if not a cure.
Original Source: LRH Publications.
Basic science of trigger points
"The conventional explanation for trigger points is that a small patch of muscle fibers has become clenched so tightly that it chokes off its own circulation. This causes a build up of waste products that aggravates sensory nerve endings and causes more clenching — a vicious cycle.
A “sarcomere” is the smallest functional unit of muscle physiology. Muscles contract because sarcomeres contract. A sarcomere consists of several threads of protein that overlap like the tines of a fork, grab onto each other like Velcro, and pull towards each other. Sometimes a section of sacomeres contract excessively.
Why? There are several possible triggers:
Injuries in general cause protective spasm around adjacent joints to limit movement. This often becomes chronic, and the muscle develop trigger points due to the constant over stimulation. The overexertions of weekend warrior-ism may lead to trigger point formation due to the excessive and unfamiliar stimulation of one of those muscles “you didn't know you even had.”
A cold draft often leads to the formation of trigger points. The body reflexively increases muscle tone when the overlying skin is chilled. Emotional stress and fatigue increases the resting tone of muscle, and lowers our pain threshold, both of which probably predispose us to trigger point formation.
Once they have started, trigger point tends to choke off their own blood supply, causing a build up of waste products that aggravates sensory nerve endings and causes more clenching — a vicious cycle. This is why trigger points tend to be persistent. It also makes it easy to see why massage can help to relieve them with well-aimed squishing that both moves stagnant tissue fluids and mechanically lengthens the sarcomeres.
Meanwhile, while sarcomeres up and down the line get stretched out, which results in a muscle that is partly contracted and partly over-stretched. This is why stretching does not necessarily help: most of the muscle is already stretched too much.
Finally, since sarcomeres depend on overlap of their protein fibers for muscle contraction, muscles with trigger points are also weak. Their sarcomeres’ proteins can't get a grip on each other. And so lifting weights with muscles that have trigger points in them does not work terribly well: not only will you not be able to lift much, but your tissues will probably not adapt well to the stress."
on this subject off site link
Just a little note on the enervation super sensitivity that happens with MPS points. Don't both looking up enervation super sensitivity unless you have a medical degree, as most discussions about it are for doctors ... what it means in a layman's terms however, is the nerves are trapped, blocked, pinched and overtly sensitive, often due to the fact they are nearly starving to death for lack of blood supply. A quick glance at the above notice on trigger points, makes the reason for that pretty apparent. They are under stress, and scream that message to the brain, as they are chronically irritated.
Now what this means for those of us with FM ? A simple analogy you have all experienced at least once. Which is, whacking your elbow, while hurrying out of a doorway for example. Hitting "funny bone" as it's so called, it's such a common experience, we even have a name for it, and it's not at all funny to experience, it's quite painful. But what does it mean to the body ?
It means your entire forearm and hand go numb, tingle, as you dance about, holding your elbow, normally bent over due to the pain, saying a few choice words, as you rub your elbow. If you happened to be holding anything at the time, it just hit the floor, as the hand holding the object, just quit working.
Why does this happen ? Because you just smacked a very large cluster of nerves that happen to lie very close to the surface at the elbow joint. And those nerves are now screaming a message of pain to the brain, as well as, they cannot even remotely make the arm below that nerve center work, as the entire messaging system just got totally scrambled and over stimulated, due to striking the nerves. Now this odd little pain dance typically goes away after a few moments, with some lingering pain due to bruising perhaps.
image that same thing,
taken down a few steps, the same pain, same tingle, the same loss of
and weakness and now spread it out over nearly every joint muscle
in the body and you get some idea of what it means to have chronic
pain, for a person with MPS.
Now here's my definition
in a layman's terms of what the medical facts
really mean in terms of your quality of life
BTW... I'm not whining here
... despite how this is gonna sound........
and I'll bop the first person to suggest it...gently of course...
This is REALLY
...the fast and dirty version of what it means to be me, or anybody
thanks to FM. If you are fainthearted skip this part
and go on to the next section
( but you won't understand nearly as much, if you do)
ya nervous yet?... good... :)
Nasty ani't I ?
Wide spread pain in every joint and muscle you have for no good reason.. weather 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
Can't eat, due a whole host of gastrointestinal problems, more on that later
I wont 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
Almost No delta sleep the point where the body rebuilds, the chemistry of the brain wont let you get there, and if you do, it wont let you stay there.
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 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, Ive 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, its 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, till your eyes so tired they are weeping, and blurred so ...
The last thing I want to hear, when I drag my still tired, stiff and aching body outa bed, after I finally passed out for a few hours, is "Good morning lazy bones" .. this is beyond uncalled for.
You crack open your eyes and the first thing you notice when you try and move, is 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 and 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 for the acid reflux.
Not to mention 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 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 badly burned when this happens.
any of you who have had children recognize this state, it's called
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 don't 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.
Weather 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 your almost always cold, you make sure you have on socks and might even put on a hat to keep in the body heat.
So 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 ant acid bottles or chew up a few tablets in lieu of any food, and 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, 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, 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 a client needs gets done, now, updates to pages, change this, add that, make this image etc.
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, otherwise
they may as well have not asked me. So I save all letters and hope 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, 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 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" for the body, VS the odd and contorted positions you find yourself in as the body is trying, HARD to avoid more pain, so it literally twists you, which causes its own pains 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 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.
adds even more pain to the mix, as now those things hurt too. And you
yourself in even more odd postures, as now your trying to avoid causing
areas more pain. Such things have to be watched with extreme care, as
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.
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 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. Mind now, I have yet to eat, so I am doing all this on no fuel. Nor will there be any, till much later when the stomach etc., settles down and allows me to eat.
Now, despite all this, I manage to run a small business, with a mostly satisfied customer base, who learn quickly that some days I might not be able to do what they want of me, but that I will as soon as I can, and most forgive me that. I make web sites, I digitally paint artwork, I write articles in short 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 make deals with yourself regarding the housework and any other responsibilities.
You ,who could take care of yourself ,and anybody else who came along..
to choose if we are going to do dishes today, or do the rug.. because
you 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
For an excellent story that shows this point well, please see "But you don't look sick ?" Spoon theory, shared with me by a fellow FMer :) Spoons
And smack hell out of ( with a stick..doing it with your hand would hurt YOU more..) anybody who even makes one comment about the state of your house
They tried to give me bi-focals. I can't wear them, why ? Because, looking down, hurts, 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.
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.
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 )
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 it 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 the plane, as the enforced legs down posture for hours means, my legs no longer work and wouldn't hold me to try and stand up.
Broken toes so often 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 were 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 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 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, and 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 outa 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 those 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 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.
Then there's the heart burn so bad from all of the above and what few meds they will LET you have, till you swear you are having a coronary due to the pain.
The flesh of your hands thinning out in places, till your own nails running across them is enough to cut you, due to Carpal tunnel and Raynauds. Due to the Raynauds you need gloves to get anything out of the freezer or experience major pain spasms and cramping and pain.
( 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 them 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, from how often you spill things on them, because the hands don't do what you tell them to do ... you tend to use straws to avoid this ... preferably with sealed lids.
The foam covered, screw lidded, over sized drink cups from many convenience stores become the only cup you can use safely. Even if ,when full ,they can hurt, as they can be too heavy on the wrist joints.
You tend to give up eating away from home all together, due to this. Believe me the first time you get hit with this 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 I had lunch.
You change your diet repeatedly, in the hope you can find something that wont 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 your intolerant of some food or other, and it is causing part of the problem, and eliminating that, will ease the problem, 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.
fast more than you feed, which is the worst thing you can do, but you
really make yourself do anything else..) And then, to top
off, you have to listen to well meaning family members who insist you
more ! As they don't understand why you don't.
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 diarrheal episode. If it were not so, 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. Till you literally shake with exhaustion, and feel like someones 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 done, 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 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 intoxification this situation creates. Doing almost anything to get things moving again.
day when your bowels
move in a normal manner, you want to take a picture of it, so you can
what that looks like over the next year or so. Because that's how long
it will be, before you see that again. But to many doctors, this is
a "motility problem" and not worthy of much concern or care on their
is no page of official
information will tell you this, but anyone with FM knows it to be true,
11 years ago I had a hard time convincing people I was 40... they gave me 30 AT most.
could tell em I was
60 and they would believe me due to the aging effect of being in
pain and the bodies degeneration.
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 can do this over and over, in a row..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 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 KNOWS that Grammy don't know what day it is.
as an FYI, it didn't work, I called the school ... they thought I was a
little weird calling to ask if there was school today, but hey, it
losing out on a battle of wits, to a six year old !
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 place to pull paper from to leave notes for other people.. :)
I wouldn't remember where it
was ... much less write in it
... and if I did write in it ... I would forget to look in it !!!
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
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
stupid when you fail to recall what it was they asked for.. sigh... :(
Sure plays merry hell with ones ability to work a 9 to 5 job.....wouldn't ya say... ?
get this one, from other
wise well meaning folk, especially after a few good days were I was
to get some things done
The almost inevitable question of ....
"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 with a person 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 ?"
changes from day to day, hour to hour and thats just a fact we FMers
And these are the times you really curse your doctor, if you have one, because he/she most often, wont 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", because they are the size of texas !
But, you end up taking large doses of them, since its all you have. Till you wise up and realize you are just doing yourself an injury, with a bleeding stomach and potential liver damage, and stop taking them, and 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 :)
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...
is taking em when you
don't need them, and you need them nearly everyday with Fm
But you can't have them...BECAUSE you need them so much
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 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 were you really do need the medication .. and thats 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 ? )
people with FM who have had major surgery done, who save most of the
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,
pain of major surgery is less than FM pain. Does this not tell anyone
of the kind of pain I am talking about here ?
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, it takes a hell of person to really live the vow of, " in sickness and in health"...generally speaking ... When major illness walks in the door..the relationship often walks out
it any wonder a on-line FM friend of mine...committed suicide with Dr.
Kavorken... she was 27 years old !
Blessed be her passing.
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, 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 first article.
( FYI... One trick to get them to at least be informed of ALL this is to keep a logbook.. of it all.. and make sure 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 you may read will say the same thing... why ? ... Because they can't deal with, what they can't hope to cure, and most 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.
info.. there is finally a test for FM ... APA
This has not yet gained wide spread acceptance update Oct. 2004
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.
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
will hear the same tale... we are too much bother to treat As the
cannot "cure" us, so we are people they don't wanna bother with.
With a disease many of the Vets came home with, Desert Storm syndrome, which is like FM in many many respects... only one difference...DSS can kill.!
http://www.gulflink.osd.mil/ 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.
Over 20 years ago the AMA came out and said that Fibromyalgia is a REAL disease of unknown etiology, which anit no big thing, there are a great many things 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..
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
themselves to be out of date on,
some do and I bless them for their
care of their clients )
( 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.. ( which you can get OTC now, so they wouldn't even give you that..) some anit spasmodic 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, repeatedly, 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.
comes a point of diminishing returns to where what little good you get
from the medication, is more than counter balanced by the side effects,
that become just one more problem and source of pain.
Dry mouth, Urinary retention, Blurred vision, Constipation, Sedation (
which is the effect they are giving it to you for )
Sleep disruption, Weight gain, Headache, Nausea, Gastrointestinal disturbance/diarrhea, Abdominal pain, Agitation, Anxiety
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 the most 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.
you are not aware the meds are the reason behind this sudden drive to
sweets, you can literally eat your way into many excess lbs. And then
made to feel guilty because you gained weight.! So the possible
you might get of the neurochemistry that's outa whack, can be easily
ridden by the side effects of the medication that is being given to
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 and definite uses, but the docs failure in this case was 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, 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 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 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 ? :(
be aware, and do the research on any new med they try and hand you, no
matter what they are treating before you commit yourself to them. Ask
and make them give you honest answers.
was Dancer by trade for
14 years...... waitress...business woman.. professional with degrees
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 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 outa their way to help for acute aliments. Get a nasty cold, or break a leg, and everybody's tripping over themselves to help you, till 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 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.
a case of damned if
you do and damned if you don't.
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 ...
are not lazy...
They are not just getting fat...
They are not just trying to get attention...
just getting old..despite
what I said.. that's a mental fiction for me... but they need and
your help... don't make them fight
that fight alone..
Here's another cut and paste to answer that and give my hands, wrists, shoulders, back a rest...( anit no whine... just fact... )
Which will say again most everything I have said... just to sum it all up here.
Fibromyalgia often occurs with chronic myofascial (my-oh-fass-shall) pain (CMP), which is a neuromuscular chronic pain condition with TrPs that can cause muscle weakness and dysfunction, and incapacitating, intolerable pain. TrPs can also cause extreme dizziness, migraines, buckling knee, clumsiness and calf cramps. Pains in localized parts of the body––the back, hands, neck and other areas, are a symptom of TrPs. Achy, body-wide pain is a symptom of FMS, but all widespread pain is not FMS. TrPs can occur all over the body in CMP, for example, causing widespread pain. FMS will amplify the pain of TrPs.
In FMS, sleep is often fragmented, and there seems to be a problem with the microstructure of sleep. People with FMS wake up feeling that they haven't slept at all. You are denied refreshing sleep, and sleep is when the body does much of its repair and biochemical regulation. The person with FMS can't recover from exercise, stress and work like healthy people.They are constantly in a state of sleep deprivation unless they find a combination of medications, lifestyle modifications and diet that work for them.
If people with TrPs are immobile at any time, such as during travel or sitting in a meeting, or movie, their muscles get stiff and painful. It can feel like you are wearing a wet suit several sizes too small, your range of motion is limited, and your muscles are weak. Morning stiffness with both of these conditions can be severe. Symptoms fluctuate from hour to hour and day to day, and may worsen with changes in barometric pressure, humidity, cold or heat. If you overextend your limits, you may have extra pain for days or weeks.
can be severe, yet
tests, X-ray and other common diagnostic tests cannot diagnose FMS or
although there may be a way to document FMS (see Algometry). TrPs are easy to diagnose if your medical care provider has been trained to do so. FMS and CMP are two of the most common sources of chronic pain, and the most undiagnosed or misdiagnosed of illnesses.
Most FMS patients have memory and cognitive impairments. The "Fog" .Doctors often refer FMS patients to psychologists or psychiatrists because of this, yet studies show that psychologically, these patients have no more abnormal psychology than arthritis patients. People with FMS and CMP are often misunderstood and doubted, and this, in addition to the chronic pain and other symptoms, could cause anyone to feel depressed and confused. An American College of Rheumatology study in 1992 found that the impact of FMS on your life is as bad, or worse, than Rheumatoid Arthritis.They listed one major factor in this as "clinician bias". FMS & CMP patients don't look sick, and their symptoms vary, so they are often misunderstood and disbelieved by clinicians, family and friends.
FMS and CMP are not progressive, but symptoms may worsen if the perpetuating factors are not identified and dealt with promptly and adequately. If you have FMS and CMP, you have a history of widespread pain and wake up every morning feeling like you've been run over by a truck. You may have headaches and loss of balance. Looking both ways when going into traffic can cause dizziness. You may have short-term memory loss and other cognitive dysfunction's, and you may not always have control over your muscles.
TrPs are incredibly painful areas that often feel like knots, hard lumps, or taut bands of fibers in the muscles, and they can be everywhere, and often refer pain to some other part of the body. They can cause irritable bowel syndrome, dizziness and loss of balance, buckling ankles and knees, pelvic pain, painful intercourse in women, impotence in men,and many more symptoms. The tightened and rigid myofascial surrounding the muscles can entrap nerves, blood vessels, and ducts.TrPs can cause blurring of the eyes, double vision, leg cramps, trouble swallowing, sciatica, numbness or tingling. Carpal Tunnel Syndrome, Migraines, TMJD, Piriformis Syndrome, and Thoracic Outlet Syndrome are some of the conditions that can be caused by TrPs. Muscles contracted by TrPs can pull bones out of alignment, and lead to osteoarthritis.
There is no cure for FMS right now. There are medications and therapies that help some symptoms of FMS and CMP. The key to reducing symptom load is always to identify every perpetuating factor (such as lack of restorative sleep, poor diet and posture, chronic pain, etc.) and deal with each of them as thoroughly as possible. It takes a commitment on the part of the patient to practice a healthy lifestyle, including good nutrition, a program of gentle stretching and moderate exercise, and avoidance of smoking and other bad habits.There must be recognition by both the patient and her/his companions in life (including the medical care team) that there are limitations for people with FMS and/or CMP. It isn't easy to find the right balance to optimize the quality of life. Be patient, compassionate, and listen. Ask if there is something you can do to help.
© copyright Devin J. Starlanyl 2002. Copying permitted if all material is kept together and authorship acknowledged.
Link to a site to give you more information...by one of the leading doctors on the subject. The same doctor whom you just read...the best there is.
Because If I had known then...what I know now
have been better armed to deal with my doctors...
I would not have spent years of self recrimination thinking I was what my doctors and my mates said I was...
That I was not just a hypochondriac 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... mean 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, weather 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.
is what knowing that this feeling had a name gave me..hope...
someday someone would figure out why and be able to cure it, or at
make a better quality to life... and in the meantime, that I can do all
I can to make life survivable, and sometimes even joyful
To take and link back to
if you want to share this information....
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you for your kind attention and I pray that this missive of mine,
in some small way helps you and yours....
Goddess Blessings to one and all....