In 1996 I was diagnosed with Fibromyalgia, Asthma, and Cytomegalovirus all at once. Most people don't even know what CMV is. It's like having a form of mono that flares up when ever it wants to. It kinda goes hand in hand with Fibro. I was only 16. I had been an active teen. I went roller-skating every weekend, ice-skating, water skiing, and I had fun roaming the mall and the neighbourhood with my friends. By the time I was 17 I could hardly make it through my day at school. I lost a lot of my friends because I couldn't hang out with them anymore. Every time I stepped outside it seemed I would get sick. I was an insomniac, sometimes staying awake for 6 days straight. I lost contact with most of my friends because I would go home and sleep as soon as school was over.

I almost didn't graduate because I missed 30 days of school. It was a nightmare. Somehow I managed to struggle through school and graduate.

After that, because I never had the energy to go anywhere or do anything, all my friends disappeared but one. She stayed with me because I was the only person who had ever befriended her in middle school and defended her in high school. I tried getting jobs. Every teen hopes to get a job, go to college, and get out on their own. I couldn't hold a job for more than 3 months. I would always get sick or injured. I'd get bronchitis and be sick for a month or a box would fall on me and I'd have a fractured wrist or dislocated shoulder..etc. So my parents told me to go to Greenville Tech. I went.

It was awful! At first, it was ok. But I just couldn't concentrate on my classes. I met Bryan there. That was back in Sept of 99. In Dec, I had quit school. In May of 00, Bryan and I were married. His parents were convinced I had AIDS because I was always so sick. I could barely go a week without being sick. Bryan stood up to his family and they kicked him out. We had to live with my parents. I'm 20 years old now. Bryan is the only one with a job.

My only contact with people is through the internet now. Poor Bryan is an energetic boy with a sluggish wife. It's an effort for me to even wander through the mall for an hour. I was never given any kind of treatment, therapy, or information on Fibro. I learned what I know through the internet. The only thing my doctor could tell me is that I may be 20, but my severity of Fibro ranks with the 40 year olds. Imagine being a 20yr old artist with fibro. It's like having arthritis..I can't paint anymore or sculpt. All I can do is computer generated graphics and web pages.

I filed for disability and was turned down. I didn't know that I should appeal it, so my time limit ran out. Can I re-apply? I can't afford a lawyer to help me battle the system.

The hardest thing for me about fibromyalgia is that no one in my family understands. My mother has it, but hers isn't as bad as mine. She can still work, so she thinks I'm just being a wimp. My father believes that you can control every aspect of your own body, so he thinks I'm just lazy. My sister is in perfect health and thinks I'm worthless. And poor Bryan tries to understand, but sometimes the frustration of being the one who earns all the money for us to pay the bills with gets to be too much for him.

Meanwhile, I'm stuck with no one understanding what it's like to be so young and to have your whole life sucked out of you. It's embarrassing to be talking to someone and not finish my sentences sometimes or to sometimes forget I was even talking. It's awful to wake up and not be able to get out of bed to be with my husband before he has to go to work. I'm on an anti-depressant, but that is all. My manic-depression is the only part of the Fibro that has been treated. I have to wonder if I will ever get back some tiny bit of my life and feel like a real person again..or if it is already too late.

I hope that the government notices your site and that they realise it is a real disease with real people suffering from it. I hope they will recognize it is debilitating and will make it easier for people with it to file for disability. Until then, the only support we have..is each other.

Fibromyalgia has not only changed my life but it has changed all the lives of those around me and those who care about me. I have had fibro/mps complex all my life, say the doctors. After much research I had to agree with them. I have never awakened without pain, or had a day without depression. Even before I was diagnosed in 1998 with fibro/mps complex, I was diagnosed with clinical depression.

At first I was glad that this pain was not in my head, then after finding out that this is a chronic "syndrome", I was devastated. Only because after 30 years I finally found out why there was so much pain, and now that I know why, I now know there is no cure "YET!"

I have learned to deal wit people that don't understand, because they cannot see the problem, I just explain it to them the best I know how. The doctors however, you know the ones, the ones that can't see a problem and therefore there is no problem!? I have learned to deal with them very well! I advise all who suffer from FMS and or CFS, MPS, etc., to tell their story. Never let a doctor tell you that there is nothing wrong with you, or that it is all in your head. Remind the doctor that he or she works for you and before you leave the doctors office give the doctor a name of a book that has helped you. Also, when you do find a doctor that is good for you, stick with him or her, do what they say, pray and the Lord will lead you to the right doctor for you.

TRACY

I am not new to Fibromyalgia, nor the web-site, but I have been lucky. I have finally found a compassionate caring doctor that doesn't believe in pain. I not only have the Fibromyalgia, the Myofascial Pain Syndrome, the Chronic Fatigue Syndrome, I have Inflammatory Osteoarthritis that literally EATS your bones up. They disappear, they also turn brittle and "sclerotic". You hurt to the point that you think suicide would be better than living like this. I also have degenerative disc disease, I have lost 5 in my neck, I have steel rods in the back and a plate in the front at C3-C-4, lots of fun there too.

I type, because my right hand is so deformed because of lack of bone in my thumb and wrist, it hurts to hold a pencil, let alone do household chores. My muscles in my legs are now hurting, it used to be only my neck and back now it is legs and buttocks. It keeps you from sleeping, from walking, some days you just want to sit and cry. So I do.

I have a beautiful new Grandson, and in the cold, I can't fly to go see him. I can't tolerate extremes in weather. People that know me watch my hands swell with pain and turn red, and say what’s wrong with you, so you just stick them in your pockets and go on.

This kind doctor I have found put me on Duragesic patches, FINALLY, with a pill every 12 hrs. as needed on top of that. Duragesic is a type of patch that is changed every 3 days, and dispenses a low level of morphine type drug in your system. So two out of 3 days, I feel great.

I wish I could go to Washington, but traveling kills me. I am under orders to not even drive, (although I break the rules occasionally).

Please add my story, but add it anonymously, heck I can't even concentrate enough to spell anymore. Good luck to all of you that are going, but traveling is out of the question for me. I would be in the hospital if I went up there. Just going to the grocery store sometimes puts me to bed for days.

I love your web site, keep it up, we all need relief of some sort. This is a real, painful destroying fracturing type of disease that literally eats your life up.

I have a 28 year old daughter with it, trying to work 14 hr. shifts as a Nurse, and No one will give her anything for pain, because one you are too young, and two you are a nurse and you might mess up. At least she should be allowed pain free days when she doesn't work.

Name withheld by request

FMS & Me

I was born in Glendale, California, on November 25th, 1969, raised the first few years of my life in silvery Hollywood, and transplanted to Midway City (aka Little Saigon) around age 3. As a baby, my mom claim's that I never slept. Just what every new mother wants! As I grew older, I was a hyper child. Most of my friends were boys older than me and I played their vigorous boy games, "Cowboys & Indians," "Cops & Robbers," "Live Re-enactments of Scenes From Star Wars with Fresh Fruit," etc. I loved sports and was very athletic. I excelled in softball, basketball, ran track & field, swam like a fish and received ribbons and trophies in all those fields. At the same time, I had allergies that were alarmingly difficult to reign in. My folks schlepped me to GP's and allergists constantly. I had "scratch" tests which were like some form of archaic torture method. Still, I was fairly happy throughout. Heck, I was downright giddy! I had recurring sinus infections, scarlet fever, chicken pox....My mother was frantic in her attempts to better my health. She made my bedroom "sterile," removing carpeting and draperies and accoutrements, & admonished me to not keep any thing aesthetic & not useful that would just "clutter" & "collect dust."(Now I'm an artist specializing in creating things solely for their "aesthetic" value!)

The tide took a dramatic turn when I reached age 13. I slowed down, became fatigued, depressed, withdrawn. Everyone just chalked it up to adolescence, but I believe now, that FMS was beginning to kick in. I remained lethargic & withdrawn throughout my teen years. I seemed to be feverish every day. I felt flu-like symptoms constantly. One day, in the band room in my high school, my friend Kristen was cleaning out the band's first-aid supply kit. To be silly, she popped a thermometer in my mouth, and we were both startled to see my temperature was over 100 degrees!, when I didn't feel any different than was normal. At home, I withdrew into myself, into books & music. In my early twenties, I began to climb slowly, like a bear coming out of hibernation, out of my shell. Still without insurance or the financial resources to really delve into my condition, I soldiered on, throwing myself head-on into every activity I attempted. But I always felt sick and the most mundane tasks seemed a struggle. Yet, strangely, that motivated me to make decisions and grab opportunities I wouldn't have otherwise chosen. At a time when most of my friends were setting up house or pursuing degrees/careers, I took off across country by myself to explore for a couple months. I drove slowly up the whole of the West Coast, came to Seattle, and settled there for awhile when I was 18. I've played guitar in bands & led the rock-n-roll lifestyle, partying until dawn. Then around my mid-20's, my condition began to worsen. I would be standing up straight, and suddenly, my knees would buckle and I'd fall. It was particularly noticeable whilst attending college, where I had many classes up many flights of stairs, and there was no access to an elevator. How I dreaded those stairs! By the time I got to the top, I'd be exhausted, sweating and panting. I'd collapse at my desk, only to consumed with brain fog. How frustrating that was when I'd studied for days for an important test. If I was late for a class, the brisk walk across the large campus would bring about terrible pain in my legs the day after. It wasn't any easier at work. When given a task, I'd often forget the instructions within moments. Dizziness and disorientation became increasingly more frequent, daily occurrences. I began to get really scared. My family speculated that it could be MS or Lupus, since they run in the family, yet I was in no position to find out for I didn't have medical insurance.

On a trip to Ireland in 1995, my health got so bad I couldn't walk for a couple days. I knew now that something was terribly wrong. I became suicidal and depressed at times. I still was financially unable to seek a doctor's care. Still, I plowed forward. I got a full-time job, and for the first time in my life, in mid 1997, got medical insurance. I saw a few doctors's until I got the diagnosis. "Fibromyalgia Syndrome?" I'd never even heard of it! My Rheumatologist' flip demeanour did nothing to allay my fears. At the time of the diagnosis, there seemed to be a dearth of info on FMS at libraries and bookstores. That has since changed. But back then, I was saved by Devin Starlanyl's wonderful book on the subject, "Fibromyalgia and Chronic Myofascial Pain Syndrome."

By researching & studying everything I could get my hands on, I saw that FMS is a real disease and came to realize the extremity and complexity of the condition. I sought psychiatric counselling and my rheumatologist put me on Elavil. But I felt no change in my condition after a few months on the medication. In fact, in a sense, I felt worse! I'd become a zombie! I tried Pamelor. Same thing. I tried Flexeril & Naproxen. No diff.

Meanwhile, I was eating extra-strength Tylenol like candy to get me through the day. I quit my job in 1998 and moved to London to be with my then-boyfriend/now-husband Chris, and there, my condition deteriorated. The combination of the cold climate, the crowded noisiness of London life, and stress in my personal life did me in. My symptoms ranged from blurred vision, to spasms, to intense all over muscle pain that literally brought me to my knees. After much deliberation, we left London for good, and returned to California, where the climate is milder, and I've got friends and family to help support me.

I've managed to nurse myself back to a more liveable state, with the aid of Chris & my parents. I'm taking care of myself holistically, using info I've culled from the Internet & by trial & error on my person. I still need to get a lot of rest. I spend anywhere from 10-14 hours in bed daily, but I don't experience the devastating flares that turned me into a rampaging, screaming banshee girl. I have to use a cane occasionally, and I'm unable to hold a job. Playing music is still important to me, and I play guitar & mandolin, write & record music on those days my body is working.

I've made two attempts to get disability, to no avail. Due mostly to the fact that I do not see a doctor regularly, since there is no medication or effective treatment for FMS. If you want to play the game, you've got to play by society's rules! Society is set up in such a way, that if you want to get the benefits you're entitled to as an American citizen, you've got to fork out the bucks on expensive doctors and keep them well stocked in Mercedes Benz's, even if there is absolutely nothing they can do for you, except tell you to eat a healthy diet and get some exercise!

It is my sincere hope to see Fibromyalgia Syndrome one day soon recognized by the medical community and the media as the truly debilitating, curseful condition it is. The millions of us in too much pain to speak out or raise a finger need household assistance, affordable medical care, and sympathy from the medical community, not derision. Then and only then, will the alarming rate of suicides amongst those afflicted with FMS drop. We need our pain quelled and our voices heard. Hope my story is of some use to someone somewhere.

October, 2000
Addendum;

As of January 2001, my health has taken a turn for the better. I really don't know what has happened to facilitate this, but I'm not going to argue! I'm working part-time in an office & I haven't missed a day since I started over a month ago. I'm very proud of that fact. I'm walking an hour a day, & very active in music. My energy levels are pretty good. I'm still in pain, & experience a plethora of symptoms regularly, but overall, I'm much better than I was two years ago. This is a very mysterious illness!

Angel LaCanfora-Jones