If you were born with healthy genes, you may know me but you don't understand me. I was not as lucky as you. I inherited the predisposition to chronic pain, fatigue and forgetfulness. I was diagnosed with Fibromyalgia (FMS) after months, years or even decades of mysterious physical and emotional problems. Because you didn't know how sick I was, you called me lazy, a malingerer, or simply ridiculous. If you have the time to read on, I would liketo help you understand how different I am from you

WHAT YOU SHOULD KNOW ABOUT FIBROMYALGIA
1. FMS is not the newest fad disease. In fact, it isn't a disease at all, and it isn't even new. In 1815, a surgeon at the University of Edenburgh, William Balfour, described Fibromyalgia. Over the years, it has been known as chronic rheumatism, myalgia and fibrositis. Unlike diseases, syndromes do not have a known cause, but they do have a specific set of signs and symptoms which, unfortunately for the patient, take place together. Rheumatoidarthritis and lupus are also syndromes.

2. The many physical and emotional problems associated with FMS are not psychological in origin. This is not an "all in your head" disorder. In 1987, the American Medical Association recognized FMS as a true physical illness and major cause of disability.

3. Syndromes strike life-long athletes as viciously as they do couch potatoes. They can be disabling and depressing, interfering with even the simplest activities of daily life.

WHAT YOU SHOULD KNOW ABOUT ME
1. My pain - My pain is not your pain. It is not caused by inflammation. Taking your arthritis medication will not help me. I can not work my pain out or shake it off. It is not even a pain that stays put. Today it is in my shoulder, but tomorrow it may be in my foot or gone. My pain is believed to be caused by improper signals sent to the brain, possibly due to sleep disorders. It is not well understood, but it is real.

2. My fatigue - I am not merely tired. I am often in a severe state of exhaustion. I may want to participate in physical activities, but I can't. Please do not take this personally. If you saw me shopping in the mall yesterday, but I can't help you with yard work today, it isn't because I don't want to. I am, most likely, paying the price for stressing my muscles beyond their capability.

3. My forgetfulness - Those of us who suffer from it call it fibrofog. I may not remember your name, but I do remember you. I may not remember what I promised to do for you, even though you told me just seconds ago. My problem has nothing to do with my age but may be related to sleep deprivation. I do not have a selective memory. On some days, I just don't have any short-term memory at all.

4. My clumsiness - If I step on your toes or run into you five times in a crowd, I am not purposely targeting you. I do not have the muscle control for that. If you are behind me on the stairs, please be patient. These days, I take life and stairwells one step at a time.

5. My sensitivities - I just can't stand it! "It" could be any number of things: bright sunlight, loud or high-pitched noises, odors. FMS has been called the "aggravating everything disorder." So don't make me open the drapes or listen to your child scream. I really can't stand it.

6. My intolerance - I can't stand heat, either. Or humidity. If I am a man, I sweat.profusely. If I am a lady, I perspire. Both are equally embarrassing, so please don't feel compelled to point this shortcoming out to me. I know. And don't be surprised if I shake uncontrollably when it's cold. I don't tolerate cold, either. My internal thermostat is broken, and nobody knows how to fix it.

7. My depression - Yes, there are days when I would rather stay in bed or in the house or die. I have lost count of how many of Dr. Kevorkian's patients suffered from FMS as well as other related illnesses. Severe, unrelenting pain can cause depression. Your sincere concern and understanding can pull me back from the brink. Your snide remarks can tip me over the edge.

8. My stress - My body does not handle stress well. If I have to give up my job, work part time, or handle my responsibilities from home, I'm not lazy. Everyday stresses make my symptoms worse and can incapacitate me completely.

9. My weight - I may be fat or I may be skinny. Either way, it is not by choice. My body is not your body. My appestat is broken, and nobody can tell me how to fix it.

10. My need for therapy - If I get a massage every week, don't envy me. My massage is not your massage. Consider how a massage would feel if that charley horse you had in your leg last week was all over your body. Massaging it out was very painful, but it had to be done. My body is knot-filled. If I can stand the pain, regular massage can help, at least temporarily.

11. My good days - If you see me smiling and functioning normally, don't assume I am well. I suffer from a chronic pain and fatigue illness with no cure. I can have my good days or weeks or even months. In fact, the good days are what keep me going.

12. My uniqueness - Even those who suffer from FMS are not alike. That means I may not have all of the problems mentioned above. I do have pain above and below the waist and on both sides of my body which has lasted for a very long time. I may have migraines or hip pain or shoulder pain or knee pain, but I do not have exactly the same pain as anyone else.I hope that this helps you understand me, but if you still doubt my pain, your local bookstore, library and the internet have many good books and articles on Fibromyalgia.

Author's note: This letter is based on communications with people throughout the world, males and females, who suffer from Fibromyalgia. It does not represent any one of the over 10,000,000 people with FMS, but it can help the healthy person understand how devastating this illness can be. Please do not take these people and their pain lightly. You wouldn't want to spend even a day in their shoes. or their bodies.



I am not sure who it was who wrote this , but it is so very accurate! Every detail and point so true for us. Thank you to the Author for spending the time and researching this topic. Thank you for this perfect portrail of what it is like for us. You were amazing!!! Thanks again! ~ Carl'a


Here is another. Again no idea who the Author is. But once again truelly amazing!



Imagine how you would feel if .

. you'd got the worst dose of flu you've ever had, and know it could last for 5 or 10 years or more.

. you're getting over a bad virus, feel totally drained and only have the energy to potter about indoors or lay in bed. You'd expect to be better in a week or two, wouldn't you? So did I, but I'm still the same years later.

. you were trying to walk through custard!

. you were always too tired and achy to do the things you enjoy, as well as simple things that well people take for granted like popping out to the shop.

. you feel a bit better for a few days (or weeks or months) then it all comes crashing back and you feel worse than before.

. you can only go out at the most once or twice a week because it tires you out so much, and takes you days to recover from each trip.

. you wake up every morning feeling just as tired as when you went to bed the night before.

. you had to wear sunglasses indoors!

. you need to go to the toilet but you get half way up the stairs and your legs hurt so much you don't think you can make it.

. having a bath or shower exhausts you so much that you're too tired to lift your arm to brush your hair afterwards.

. it's a great achievement to cook your dinner without burning it, or yourself, or misreading the instructions.

. on the rare occasions when you are well enough to go out people assume that you're better, even though you know you'll be ill for days afterwards because of it.

. you never drank alcohol, but you woke up every morning with a hangover.

. you woke up in the night drenched with sweat, threw off the duvet, woke up an hour later shivering, pulled up the duvet, woke up an hour later drenched with sweat, threw off the duvet.

. noise hurt you so much you couldn't go to the cinema, or a pub, or a church, or any shop or restaurant which plays music, or the houses of any friends who have children, and you had to shut your windows whenever your neighbours' children were playing in the garden (even if it was 30 degrees outside!).

. you didn't dare eat a meal at a restaurant or at a friend's house because you wouldn't know exactly what was in it, and if you accidentally ate even a small amount of one of the dozens of foodstuffs which upsets your stomach you would be awake and in pain all night.

. every few weeks, without any warning, you were stricken with a mixture of gastric 'flu and the worst indigestion you'd ever had, and you spent the night wondering whether you were going to have a heart attack or just throw up, and you were shivering so much you couldn't stand up and had to keep crawling to the toilet on all fours.

. you have random aches and pains all over your body - in your arms, your fingers, your legs, your neck. You have frequent headaches. You feel heavy as though extra gravity is pulling you down all the time. You feel dizzy whenever you're standing and constantly sick, and there are no magic pills to make you feel better.

That's how I feel every day.



Another. . . .


My Name is Fibromyalgia, and I'm an Invisible Chronic Illness. I am now
velcroed to you,for life.
*
Others around you can't see me or hear me, but YOUR body feels me. I can
attack you anywhere and anyhow I please. I can cause severe pain or, if
I'm in a good mood, I can just cause you to ache all over. Remember when
you and Energy ran around together and had fun? I took Energy from you,
and gave you Exhaustion. Try to have fun now!
*
I also took Good Sleep from you and, in its place, gave you Brain Fog. I
can make you tremble internally or make you feel cold or hot when
everyone else feels normal.
*
Oh, yeah, I can make you feel anxious or depressed, too. If you have
something planned, or are looking forward to a great day, I can take
that away, too.
*
You didn't ask for me. I chose you for various reasons: That virus you
had that you never recovered from, or that car accident, or maybe it was
the years of abuse and trauma.
*
Well, anyway, I'm here to stay!
*
I hear you're going to see a doctor who can get rid of me. I'm rolling
on the floor, laughing. Just try. You will have to go to many, many
doctors until you find one who can help you effectively.
*
You will be put on pain pills, sleeping pills, energy pills, told you
are suffering from anxiety or depression, given a TENs unit, get
massaged, told if you just sleep and exercise properly I will go away,
told to think positively, poked, prodded, and MOST OF ALL, not taken as
seriously as you feel when you cry to the doctor how debilitating life
is every day.
*
Your family, friends and co-workers will all listen to you until they
just get tired of hearing about how I make you feel, and that I'm a
debilitating disease.
*
Some of them will say things like "Oh, you are just having a bad day" or
"Well, remember, you can't do the things you use to do 20 YEARS ago",
not hearing that you said 20 DAYS ago. Some will just start talking
behind your back, while you slowly feel that you are losing your dignity
trying to make them understand, especially when you are in the middle of
a conversation with a "Normal" person, and can't remember what you were
going to say next!
*
In closing, (I was hoping that I kept this part a secret), but I guess
you already found out. . .
*
the ONLY place you will get any support and understanding in dealing
with me is with Other People With Fibromyalgia.
*
Except the minority of us, who like me, have support from their
immediate family; some get it from their spouses, and then
again.sometimes, not!
*
Others spend years explaining and re-explaining to siblings, children,
neighbors, and so on, only to find that they are really non-believers.
And, yes.there are even *medical professionals* who don't believe I
exist. But, I doand, one day they will see the light. Some
will even be afflicted.
*
Now,.YOU know *why* they call ME the *Invisible Disease!*; and,
if you don't yet because you are newly diagnosed, no doubt you will
encounter the disbelief and sarcasm sooner or laterso, brace
yourself!!
*
I am real.I DO exist. At least, you, the afflicted, know this!
You feel the pain every day, with every breath.
*
Your mission, if you choose to accept, is to seek the best medical care
you can find, because you are going to need it!! Stand up for yourself,
and ignore the non-believers. They are not afflicted nor are they
affected by your pain and anguish, so discard them, and move on to those
who will help US.
*
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