A letter to my Fibro Friends
Twisted Kneads  My polymer clay website
Site owned and operated by
Mae M. Holley     2006, 2007, 2008
This started out as a simple introductory letter to a Fibromyalgia support group that I have just joined.
Once I got started the words and feelings started spilling over and it became so long I realized it is just too
much to post to a group of fine people that already have enough to do just to get through their day. I wrote a
more considerate introductory post and added a link to this page so they would have the CHOICE as to
whether they wanted to read it or not. With that being said . . .

Hello Everyone . . .
Your group is a very busy place and since my first post became so huge I opted to just put it here where you
can choose to read it or not instead of me imposing all my chatter into the group's messages. I figured
"choice" would be a good thing . . . you can read it IF and WHEN you want and not have to read a dang
novel when you are slap-dab in the middle of a raging flare from hell.

My name is "Luny" (Michele). I've had Fibromyalgia for over ten years. There is not a moment when there
isn't some level of pain but I've had it for so long it feels "normal" because I can't remember feeling
otherwise. What I dislike most is my lack of interest in everything - even things I love to do - simply because
EVERYTHING seems to be a chore. I force myself to do things and then pay the price but I ain't going down
easy and I'm gonna keep a damn smile on my face just for spite. I may be sick but I don't need no stinkin'
bad attitude to make my own, or anyone else's, life worse. I want to be part of the solution, not part of the
problem. I want to help us fight the dreaded beast that shreds our lives.

I tend to ramble, I digress, I get lost in my own words but when I post to your group I will try to be as
considerate as I can and not flap my lips too much because I know that when you do have some rare
"up-time" it is a precious treasure and sitting in front of a computer reading a long post is not gonna be your
first choice in entertainment, lol!

I used to be a very active and strong person. Always busy, ready to do anything or go anywhere at the drop
of a hat but, now, if anyone drops a hat, the vibrations from it hitting the floor just makes me squirm in
discomfort. All because of FMS/CFS and a few other mean monsters.

The "me" I used to be. Where did "I" go? The pain and fatigue are enough to take a strong man down. . . the
lethargy and brain fog makes me feel older than mud and dumb as a stump. There are days when I can just
about build my own computer and there are days when I can't find the power on button. The pain I had
yesterday may relocate itself to another location so today I may complain about a sore shoulder instead of a
sore neck. Some days everything hurts. Try to explain that to folks around you when you don't even
understand it yourself. You can almost hear them thinking ..."One day it's this, the next day it's that. It's
always something with her!" ... They love to slap labels on us ... "lazy, dumb, irresponsible, hypochondriac,
useless, air head" ... you  know the drill. Folks just walking around with a fist full of sticky labels so they can
slap one on our forehead.

That sounds like a full plate of problems but let's not forget to add the big one . . .GUILT. Now that's a real
mind-slammer, ain't it? If you want to shut yourself down completely go ahead and take that guilt trip. The
person who used to know where everyone's socks were, took care of everyone's needs, laughed, danced,
sang in the rain, made mud pies with the kids and kept promises no longer lives in your body. What
happened to the REAL you? Why can't I do things right anymore?

When you begin to realize that you really can't "DO",  it starts a mammoth landslide of frustration, doubt and
guilt. Is this Fibro stuff real or am I just trying to find excuses to avoid all these responsibilities in my life?Add
that to the real pain and fatigue and it amazes me that we still continue to hope.

You start to feel sorry for yourself and you hate it which just makes things worse. "Why me?" No matter what
you do when you discover that you have FMS .... DO NOT,  I repeat, DO NOT, travel on that road trip of
guilt. Don't throw no dang pity parties because "table for one please" sounds awful lonely. Pity never cured a
single thing anyway. What you MUST DO is to remember . . .


Stamp it on your forehead, carve it on a stone and carry it in your pocket, write it on a ten foot poster and
look at it every day. Fibromyalgia is real. There are hundreds of thousands of people experiencing the same
thing and we ALL can't be crazy. It's not "all just in your head". A doctor told me that one time and I asked
him ... "if it's all in my head then why does my foot hurt?" It wasn't the first dirty look I've gotten from a doctor
(probably not the last either). When I was young, raising four little kids by myself, working a full time job and
running a household, I suffered through fourteen years of severe migraine headaches. Looking back, I really
don't know how I got through that period of my life. I do remember the hurt I felt when I would occasionally
hear,  "Oh, it's just one of HER headaches again."  Like I really asked to be struck down with head crushing
pain so I wouldn't have to cook dinner or something. If they don't live it, they can't understand it. It was one of
those times in my life where there were only one set of footprints in the sand and they sure weren't mine.

I think my Fibro started after a terrible flu. I just never seemed to get back to "normal". Aches, pains, low
grade fevers . . . lumps, bumps and body slumps, oh my! After about a year of that I finally went to a doctor -
then another - and another. You may have heard some of these stories . . .

It's all in your head.
The aches and pains are normal for your age.
Everyone has arthritis at your age.
You are depressed ... take these pills.
All your tests came back normal.
You don't look sick.
Have you tried exercise?
We can't find anything wrong.

... and so it goes. For the record, I've had x-rays done by a specialist and I have no sign of arthritis at all. I've
never been depressed in my life. I don't look sick because I try to look decent when I go out in public (comb
my hair, wear clean clothes, brush my teeth and add a bit of blush just so I don't scare people and they start
throwing dirt on me, lol!). No matter how we feel we don't WANT to look sick. Who does?  "Oh, I think I'll
choose "look sick" as my fashion statement for the day". Give me a break. We don't want sympathy and pity,
we want HELP!

At the time doctors weren't aware of what was going on with Fibromyalgia. Heck, they didn't even have a
name for it then. I always left the doctor's office feeling like a "neurotic old woman begging for attention"
because that's how they made me feel. It's like I had nothing else better to do with my life than hang around
medical buildings. If I wanted to do that I'd have been a dang nurse. It's easy to blast the doctors because
WE know there is something not right with us and the doctor just isn't interested, doesn't know what it is or
can't find the time to look into it. I don't suppose it's all that easy for them either. It's like someone getting bit
by a poisonous snake, gets rushed to the hospital without the snake. The doctor needs to know what kind of
snake it is so he can use the right anti venom. Doctors need to know the cause of FMS and, as we all know,
FMS is a tricky devil ... we've got it and we can't even figure it out.

Today, at least, the medical community is quickly becoming aware that FMS is not something that just lives in
the mind of lazy, irresponsible people. It is a real and debilitating illness and they are getting some serious
action going.

Whatever you do, do not doubt yourself. You knew how you WERE before FMS and you know how you are
NOW. FMS is not just a vague malady of aches and pains and slight fatigue. It goes way beyond that. YOU
know there is something wrong so don't let anyone change your mind... they ain't walking in your shoes. The
internet has a wealth of knowledge ... including and, especially, this group. Do your research, arm yourself
with knowledge and head for your doctor with the information that will back you up. If he/she can't or won't
help you, find another doctor, or another until you find the one who knows how to help you.

I'm not one to talk strong about going to doctors so I reckon I shouldn't be preaching about going. I quit
going to doctors years ago because they made me feel stupid and pitiful. No one should leave a doctor's
office in tears unless they have a terminal disease or have lost a loved one. It just ain't right. Those who
know me can tell you that I am not a total moron and that pity parties are not on my agenda and that I'm the
most positive person they know. Please don't take that as some great bragging rights - it's just a way of
relating how things are with me. I have no doubt in my mind that it would also apply to almost everyone here
in this group ( I'm seeing this picture in my mind of hands being raised and heads nodding "yes, yes, me too"
and, no, I'm not physic, lol. I just know this is a group of really good people going through a really hard time).
One day you were there and then "BAM", the next day you just ain't there where you used to be.

What changed my situation was a major  smack-dab-full-force fall on hard concrete that connected directly
to my rear end. When you are almost sixty years old, that ain't good. So I HAD to go to a doctor. No broken
bones - that would have been too easy. Instead I crushed a sacro nerve which led me to a specialist and a
round of shots that did nothing, zero, zip, nadda. It did seriously put a dent in my bank account... $1000
bucks a pop and no results. Surgery was recommended with no guarantee of being successful. No thank
you very much ... I think I'll spend the rest of my money on laughing gas! Heaven help me . . . if I didn't laugh,
I'd cry.

On the upside it was discovered that I did have FMS/CFS and Epstein Barr and I did get pain meds and
anxiety meds which has made my life a bit better than it was. For a while I thought that I was getting over the
FMS because I didn't hurt as badly as before. That changed when I ran out of pain meds on one of those
three day week ends when the doc ain't in to reauthorize your prescription. Going without pain meds for
three days was a cruel reminder that FMS was still alive and well and ready to kick my arse again.

Never being one to make a long story short . . .  for the last few years I've been taking 2 (500mg)
hydrocodone tabs a day for pain and 1/4 -1/2 tab Xanax to help when there's an overload of stress. It may
not sound like very much but it does allow me a few productive hours a day. I am "allowed" to take three
times the amount of meds that I am taking but I fear the addiction. While the pain meds are for the crushed
nerve I have found that it  takes the rough edge off the pain of FMS and gives me a chance to at least keep
us in clean underwear and cook a few good meals a week. Finally ... A side effect I can live with!

There are good days and not so good days. I've deleted "bad days" from my vocabulary. Whether you are
having a flare from hell (a not so good day) or merely able to get from point A to point B without pain (a good
day) . . . it just sounds more positive in my mind to NOT say "a bad day". Okay, okay, quit your laughing. . .
silly mind games I know, but mind game exercises are the only exercises I can do without pain, lol!

Once you ACCEPT that this is the deal you've been dealt you CAN live with it. If folks around you don't
understand they will only add more crap to your pile of misery and you may lose friends. It's their loss ... on
the upside, you will really know who your true friends are because they will stay the course. You have to care
for yourself. You cannot spend your life's ticket to ride on any stinkin' guilt trips just because others think you
are just not up to par. FMS is NOT your fault . . . it's your CHALLENGE!

There's so much more to say but I have to end somewhere. For those of us with FMS and any of  the other
problems or illnesses that seem to come bundled up in it, we know we are sick. It wasn't in our plans but it
happened. Just knowing that we can gather together in one place and speak our feelings lightens the
burden. It doesn't take the pain away, it doesn't stop fatigue, it doesn't stop that foggy stuff in our head but it
does give us a voice. We can complain, we can cry, we can hope, we can ask questions, we can help, we
can express our fears and no one is going to tell us it's all in our heads. I don't know about you, but that's a
huge relief to me. I may hurt and I may be tired as hell but I sure ain't crazy!

Love and big soft hugs to all of you and Thank you. . . If you made it this far you get a gold star too!
If I didn't laugh, I'd  cry
Fibromyalgia ... my enemy, my weakness