THIS IS HOW THINGS HAVE HAPPENED FOR ME. AGAIN THANK YOU FOR YOUR INTEREST.

I WAS A NURSE FROM 1986 TO 1997, I ENJOYED MY WORK. I REMEMBER WHEN FIBRO FIRST CAME OUT. WE GAVE ANTIDEPRESSANTS TO HELP WITH THE PAIN. THE DOCTOR ALWAYS THOUGHT "HERE'S ANOTHER DRUGGIE" OR " THEY HAVE MENTAL PROBLEMS." THEREFORE WHEN I WAS DIAGNOSED YOU BET I WAS NONE TOO HAPPY. TO ME THIS WAS A MENTAL DISEASE NOT A PHYSICAL ONE. YET I HURT! I WENT TO THREE DOCTORS TO FIND OUT WHAT WAS WRONG WITH ME. A GENERAL PRACTICIONER, A RHEUMATOLOGIST, AND AN ORTHOPEDIC DOCTOR. I KNEW THE ORTHO DOC. AND I LOOKED AT HIM WHEN HE SAID FIBRO SHARON, "PLEASE DO NOT TRY THE ANTI DEPRESSANTS." HIS RETORT WAS, " HEY DO NOT WORRY, YOU ARE NOT DEPRESSED. WE DO NOT KNOW WHAT TO DO ABOUT IT." WHEW~~~~~ WAS I THANKFUL. HE JUST GAVE A NEW OUT LOOK ON THIS TERRIBLE THING.

HOW HAS IT AFFECTED MY FAMILY? WELL MY MOM DID NOT BELIEVE IT FOR YEARS. YOU CAN NOT SEE PAIN. MY DAUGHTER? GOD LOVE HER. SHE STARTED ON DRUGS, ACTED OUT, BECAME UNRULELY, HER MOM WAS NOT MOM ANYMORE. SHE WANTED WHAT WAS MOM BACK! WE USED TO GET UP AND JUST TAKE OFF. I COULD NO LONGER DO THAT. EVEN AT 19 NOW SHE STILL WANTS MOM BACK. MOM HAS BEEN TOLD I WILL NEVER WORK FULL TIME ANYMORE. AS A SINGLE PARENT THAT IS HARD NEWS, NOT TO MENTION THE ACTIVITY LEVEL HAS DROPPED.

THEN CAME THE MIGRAINES.. OOHHH GOD WHAT HAS HAPPENED TO ME? I ALWAYS HAD MIGRAINES BUT WAS ABLE TO WORK WITH THEM. NOT THESE. THEY HIT HARD AND STRONG. WELL YOU KNOW THEN CAME THE DEMEROL SHOTS. I WAS OUT COLD. THEN THE FIBRO FOG. I THOUGHT OKAY NOW I AM GOING THRU EARLY ALZHEIMERS. LORD I COULD NOT REMEMBER A THING. NOT EVEN WHO I WAS ON SOME DAYS. YEAH YOU REALLY WANT AN INJECTION FROM ME. THEN THE SWELLING OF MY HANDS AND FEET. SO BEING A NURSE I HAD THEM RUN EVERY TEST THERE WAS. WE RULED OUT LUPUS, ARTHRITIS, YOU NAME IT WE CHECKED ON IT. SO I STILL WOULD NOT ACCEPT IT. GOTTA BE THE ALLERGIES... WENT THREW THOSE TESTS. YEP I HAD THEM GALORE. YET I COULD NOT TAKE MY SHOTS WITH OUT AN INFECTION SETTING IN. OKAY FINE, I CAN FIX THIS TOO. THREE SEPTAL NASAL SURGERIES. AFTER THE HEAVY ANESTHESIA I FELT GREAT, PAIN IN MY NOSE, BUT MUSCLE WISE GREAT! ALL MUSCLES IN MY CHEST WERE LOOSE. NO LONGER WHEEZED. WOW! WHAT IS GOING ON. BY THE THIRD SURGERY I KNEW. IT TOOK SOMETHING THAT STRONG TO LOOSEN MY MUSCLES. OH MY. NOW WHAT!

THEN THE MIGRAINES. MY LAST TRIP TO THE DOCTOR IN JUNE OF 1999 I SAID "DO NOT DIAGNOSE ME WITH SOMETHING THIS PAINFUL, GIVE ME ANTI DEPRESSANTS AND EXPECT THEM TO WORK. SEND ME TO THE PAIN CLINIC DAMN IT WHERE THEY WILL BELIEVE ME! I HAVE HAD ENOUGH!" IT WAS THEN I WAS PLACED ON OXYCONTIN. WITH THE FIRST PILL, THERE WAS NO DROWSINESS THERE WAS NO PAIN! WHAT A PILL I THOUGHT. WOW!

THEN BY OCT OF THAT YEAR I WAS COMMITTED. WHY? I HAD SPASMS SO BAD MY THROAT WAS CONSTRICTING AND I COULD NOT TALK. I WAS SENT FOR AN EVALUATION TO RICHLAND SPRINGS. THEY TOLD MY MOM I WAS HOMOCIDAL AND MY DOCTOR I WAS SUICIDAL. I WAS NEITHER. THEY ASKED AND I SHOOK MY HEAD NO. I WAS EVEN ABLE TO FINALLY SAY I HAVE A COUNCELOR! THEY SENT THE PERSON WITH ME OUT FOR MY CIGARETTES AND THEY LOCKED ME IN AND HER OUT! THEY GRABBED ME FROM BEHIND AND GAVE ME HALDOL AND ATIVAN. I ALSO HAVE A SEIZURE DISORDER. THE MEDS THAT THEY GAVE ME COULD HAVE COUNTERACTED THEM. DID THEY CHECK? NO! CAN I FILE SUIT NO! THEY HAD PROBABLE CAUSE. THEY WERE GONNA KEEP ME A WEEK UNTIL I REMINDED THEM ALL THEY HAD WAS 72 HOUR OBSERVATION TIME AND THEN I WAS TO BE RELEASED. IT WAS THE LAW. I WAS OUT WITHIN THE NEXT TWO DAYS.

SO FIBROMYALGIA HORRORS DO I KNOW THEM? YES I DO. I HAVE BEEN DENIED TWICE FOR DISABILITY AT THE AGE OF 42 NOW GOING ON 43. IS IT FAIR? NO!

SO WILL I BACK YOU WITH EVERYTHING I HAVE LEFT IN ME? YOU BET I WILL. I AM TIRED OF IT ALL. I AM TIRED OF THE PAIN. OXYCONTIN NEEDS TO BE INCREASED. I DO NOT HAVE THE MONEY FOR IT. I TRY TO PAINT CERAMICES. I EVEN FIRE MY OWN TRYING TO SAVE FOR ALL MY MEDS. MY DOCTOR BILL IS 1300.00 DOLLARS. YES CONGRESS, THE SENATE, THE PRESIDENT FOR THAT MATTER NEEDS TO KNOW WE HURT AND IT IS REAL!!

I HOPE THIS HELPS AND I BLESS YOU FOR YOUR WORK. IF POSSIBLE I WILL BE THERE WITH YOU. IN THE MEAN TIME LET ME KNOW IF YOU HAVE QUESTIONS. I WILL ANSWER THEM. I WANT THIS CRAZY STUFF RECOGNIZED. THANK YOU FOR YOUR TIME AND AGAIN MAY GOD BLESS YOU.

SINCERELY,
SHARON AKA CAROLINA

First I would like to thank you for all you are doing to help everybody fight for the rights of people who has fibro. You are a angel. My name is Terry. I have had fibro for five long long yrs. I wouldn't want to wish fibro on anybody. I know there is some days I say if a person could walk in my shoes for one day then they would know and maybe understand. I would like to add my thoughts about fibro.

I was a very active person. had been self employed most of my life. Woke up one day with a terrible pain im my chest and arm, shoulder. It got to to a point where I had to go to the er. doc several times. It got worse and worse. I ended up having to get rid of my businesses. To make a story short. fibro had been a very chronic painful illness for me. I have it in all 18 points, along with chronic fatique, anxiety, sleep disorder, irregular bowel sydrome, depressions, sinus infections, immume disorder. and I guess I could go on.

The pain gets so bad past the burning stage. I have had to go on bed rest a many of times. Most pain meds don't take the pain away. The muscles get locked up where it causes bruises or tore marks. Feel like sometimes I could just die. I have to work any though my doctor wants to not to because I have to have insurance to pay for all my meds. I know getting disabilites would take for ever. I wouldn't be able to get my meds. most of the time I can't hardly walk in a store have to push a buggy. All the activities I use to do I can't do any more. Not only has it affected my muscles its affecting my nerves. Please I would like to be included in your message. Thanks for your time. Terry

HI MY NAME PATTI

HERE IS MY STORY.............

I STARTED HAVING HEADACHES BAD ONES I COULDNT STAND THEM I WAS PUT ON PAIN MEDS AND SENT AWAY, THE DOTOR SET UP A MRI FOR ME AT THE LOCAL HOSPITAL, I HAD IT DONE AND IT CAME BACK NEGITIVE. BUT I FOUND OUT THE HARD WAY IM ALLERGIC TO IODINE THE DYE THEY PUT IN MY VEINS. I WENT INTO SHOCK MY THROAT CLOSED AND I WAS CLOSE TO DEATH BEFORE THE DOCTOR REALISED HE SHOT ME UP EITH BENIDRYL WHICH BROUGHT ME BACK IT TOOK ME A LONG TIME TO RECOVER FROM THAT. I HAD A BAD FLARE IN 95 THE DOTORS THOUGHT IT WAS A NERVOUS BREAK DOWN. WHEN I LOOK BACK I KNOW IT WAS A FLARE IT LASTED 6 MONTHS I HAD FOUND OUT MY HUSBAND WAS CHEATING ON ME WHICH I WAS DEVISTATED I JUST WENT DOWN HILL FAST.

I TOOK LOTS OF MEDS AND TRANQULIZERS PAIN MEDS MUSCLE RELAXANTS ALL KINDS I BASICALLY SLEPT ALOT AND GOT VRRY DEPRESSED THE DOCTOR PUT ME ON ANTIDEPESSANTS THEY HELPED.

IN 2000 I HAD ANOTHER FLARE AND IM STILL IN IT . I WAS DIAGNOSED WITH FIBRO IN DECEMBER 2000. I WAS SICK AND VERY TIRED LITERALLY FALLING ASLEEP SITTING UP VERY DEPRESSED EVERY BODY SAYING WHATS WRONG WITH YOU YOUR NOT YOURSELF, YOUR SO LAZY.YOU DONT GET UP ON TIME FOR THE KIDS TO GO TO SCHOOL WHAT KIND OF MOTHER OVER SLEEPS FOR THERE CHILDREN EVERY MORNING [THEY ARE WORDS OF WISDOM FROM MY SISTER IN LAW] ANYWAY BACK TO THE DOCTORS I GO THAT WAS IN AUG. HE PUT ME ON ALOT OF DRUGS AND TOOK BLOOD TEST THEY CAME BACK POSITIVE SO NOW IM DIAGNOSED WITH LUPUS GETTING MYSELF READY TO ENDURE LUPUS FOR THE REST OF MY LIFE I GO TO A RHUMETOLOGIST AND HE SAYS NO ITS FIBRO TENDINITUS AND BONE SPURS I ALSO HAD MONO SO NOW NEW MEDS NONE REALLY WORKED THAT WELL.

NOW I HAVE TO EXPLAIN THIS GHOST THAT LIVES INSIDE ME .[NAMED FIBROMYALGIA] I HAD TO COME TO THE UNDERSTANDING THAT THERE IS KNOW CURE AND MOST TREATMENTS DO NOT WORK. THIS IS HARD SO I DECIDED AFTER MEETING EVERYBODY ON LINE IN CHAT ROOMS MESSAGE BOARDS I HAVE TO LEARN ABOUT MY ILLNESS AND MY FAMILY HAS TO BE TAUGHT . I GO TO COUNSELING ONCE A WEEK AND I TAKE MY CHILDREN IF THEY WANT TO GO. MY HUSBAND IS THE TYPE HE DOESNT BELIEVE WHAT HE CANNOT SEE, I DID MANAGE TO GET HIM TO GO TO THE DOCTORS WITH ME SO HE CAN UNDERSTAND THAT I MAY LOOK WELL BUT IM NOT WELL.MY CHILDREN WORRY ABOUT ME ALOT. I TALK TO THEM I LET THEM KNOW HOW MUCH I LOVE THEM THEY ARE MY LIFE .I HAVE 3 CHILDREN 1 DAUGHTER IN LAW AND A BUEATIFUL GRANDDAUGHTER 13 MONTHS OLD . MY STEP SON RICKY IS 22 HIS WIFE KRISTEN IS21 MY SON MICHAEL IS 13 AND MY DAUGHTER HOLLY DAWN IS 8 YEARS OLD . I MYSEIF AM 37 AND MY HUSBAND BUSTER IS 39. IM GETTING ALONG NOW I THINK I HAVE THE RIGHT MEDS NOW THEY AT LEAST LET ME MOVE AROUND ANDGET MY HOUSE CLEAN AND I CAN MAKE SUPPER MOST NIGHTS . IM SORRY IF I BORED YOU ALL THERES JUST SO MUCH TO SAY AND IVE NEVER TOLD ANYONE MY WHOLE STORY........... THANK YOU FOR LISTENING

PATTI

Please do not advertise me other than Cs, I do not want attention on me but on this illness we call Fibromyalgia. I have worked all my life, 18 years with my last employer. Now at 46 am not able to work because of the FM. It has been around a long time with me, just did not know it until the last 3 years as my condition worsened. Fm is very ugly, you look fine and are falling apart due to pain, Irritable Bowel Problems , Sleep Patterns that constantly change, Headaches, knots in your muscles that burn like a hot poker. It can be mild to severe, It can make your skin turn hot just laying down, it can keep you from bending to kiss a child, and the next day you may be ok, you can not get or be organized as you never know what you will have to deal with... One day you are ok the next you can't get out of bed.

It is difficult for others to believe, I have a friend with FM who walks fine for several weeks and then spends weeks in a wheel chair because her hips will not support her because of the pain. One day you may favor your hip, next day you favor the opposite ankle due to the exertion on it from favoring the hip the day before... so one day you limp on left side, next day you limp on the right. People think you can't remember which side to favor.. It has nothing to do with memory, it is called PAIN that moves. Fm folks can not exert themselves or they become bedridden for days. We need support of friends and family, but most of all we need to be understood, we are not lazy, there is nothing more that I and most who have FM would like more than to return to work and be productive.

Most Fm folks have worked hard all their lives and their bodies have been stressed from long hours and or physical strain. It has taken me over two years to realize I do not control my body and how it feels on any given day. I now do what I can when I can and try to enjoy the good days.

We need to find a cure for this very ugly illness, it is not in our head, it is in our muscles or perhaps in our sensory perception somehow, but it is REAL. We are normal people that the pain has changed how we think and how we deal with that pain differs among us.

God Bless and Thanks for the opportunity to be heard.

As a young girl at only 9 years old, I never dreamed of being struck with a chronic illness. I was young, athletic, active, happy, an all-star soccer player, but fibromyalgia and chronic fatigue syndrome, I have learned, do not discriminate. In one sweep, my health was taken away.

In December of 1994, I came down with an illness that seemed like the flu, low grade fever, muscle pain, etc. But after two weeks I was still ill and was mis-diagnosed with lyme disease. i was treated for lyme disease for 6 months, sure that it would go away. The fever did after 6 months, but the muscle pain never did. I found out after those 6 months that I never had lyme disease and was told that i had "growing pains."

In 1995, my life went on, but now with added pain, but I was still sure it would go away someday.

In the winter of 1996, the following year, I again came down with a flu-like illness that would not seem to go away. Again, I went through mis-diagnosis after mis-diagnosis, and even heard from doctors it was "all in my head." I was devestated. I did not know what was wrong with me, but all I knew was that something was wrong with me, I just didn't know what yet. Not only was I desperate, but so were my parents. Out of their desperation, they took out our insurance book and randomly selected a doctor's name. That doctor that they randomly choose was the doctor who diagnosed me finally with fibromyalgia and chronic fatigue syndrome.

It has been almost 6 years since I was diagnosed, I am now 17 years old. Fibromyalgia has taken many things away from me, including my ability to play sports, but God is faithful. God provided me with a new love, the love of writing, which I may never have discovered if it wasn't for my illness. Life as a teenager with chronic illnesses is hard, but I know that I have God, my family, and friends right by my side all the way.

Sarah Rosenman