Following are stories written by true Fibromyalgia Survivors. People like you, people that had good lives, jobs, families, dreams. Please take a moment to read their stories, for through this web page their "voices" are finally being heard. Thank you....

My life with fibromyalgia has been one of change. Some of those changes represent loss. There are several critical things that Fibromyalgia takes away; mobility and strength are primary. But with those also go criteria crucial to our identity. I had been a community activist for 20+ years and received an award from a local organization in 1999. I got the award from the Democratic Party in Brooklyn and it was presented by a NY State Senator Velmanette Montgomery. The award was for community organizing. When I accepted the award it was with some sadness, because I felt that the award was given for who I used to be, not who I was. When receiving this Award at NY State, I told people that after all the work I had done in the community, I was now fighting a new battle against a little understood disorder, Fibromyalgia.

We fibromites fight an up hill battle for recognition and treatment.

Exactly what triggered my Fibromyalgia, I am not sure. I had uterine cancer in 1987; after the partial hysterectomy and follow-up treatment, I became allergic to a variety of substances that had not previously affected me. For example, a beautiful new wool coat became un-wearable within a week. Suddenly, I could not tolerate carpeting, cats (although I had cats for 10 years) feathers, dust mites, molds, peanuts, almonds, and penicillin. I was tired all the time. In 1988 I even mentioned to a doctor that I thought I had Chronic Fatigue Syndrome. She told me "there was no such thing." In the spring of 1988 a stranger viciously attacked me when I was out for an evening with friends. I had to have stitches on the back of my head and in my eyebrow, my right eye was completely shut from the injury. I suffered whiplash and jerking. I mention this because some researchers have linked head and neck injuries to the onset of FMS.

I worked out regularly, tried to keep in shape doing aerobics and using nautilus equipment. My mother had been severely crippled with Rheumatoid Arthritis and I was determined this would not happen to me.

I had an active social life; a rising career as a computer systems bank officer which paid well. (My 3rd and 4th losses!) But I was tired all the time and susceptible to every germ--if someone sneezed at work; I got bronchitis; if a co-worker had a cold, I got pneumonia. My absenteeism was rising; my managers were looking on me less favorably and my professional reputation suffered. I was finally re-organized out of a job; informally I was told I was sick too often and people felt I was not strong enough to see projects through to completion. Ironically, I was still working 50 hours a week; and seeing a chiropractor, an allergist while trying to treat my symptoms.

An opportunity to work for a medium sized not-for profit seemed like a blessing. Perhaps in this environment my health problems might be acceptable. The reduction in stress I expected was not there; I worked 60 to 65 hour weeks but was paid well. I was spending a fortune on vitamins, herbs, minerals, and anything I thought might help. However I had no real diagnosis except adult onset asthma and Irritable Bowel Syndrome. IBS caused enormous pain, dehydration, esophageal reflux, nausea and at times rectal bleeding. My primary care physician sent me to a gastroenterologist who ordered a variety of time consuming, uncomfortable tests as well as an endoscopy which disclosed a few polyps, some scar tissue but no real explanation. My primary care physician let me know that the HMO would not be giving him a bonus due to my "unnecessary and expensive tests" for "absolutely nothing." By now, I was actively doctor shopping; I saw three internists and two endocrinologists within a year. Every time I was told, "you are a little anemic, your thyroid is low normal; you just have stress." When I complained of pain I was told well you have to expect that-- "You are 44."

Then a round of surgery began. I had surgery on my sinuses in August 1993 hoping that removal of polyps etc, would end my constant breathing problems. In 1994, I had a lymphoma removed from my scalp Meanwhile, I had changed positions with a slight pay cut to another not for profit--it was supposed to be less stressful. I was fired after 6 mos. I simply could not keep up with the job. I took half of 1994 off and the first 6 months of 1995 to finish my Masters degree. I hoped to leave MIS and its crazy hours behind me and find administrative work; I was not able to so I became a part time adjunct professor in the fall of 1995.

Adjunct professors in New York work liked gypsies, moving from school to school teaching usually at 3 or more schools. Three part time jobs were the most I could handle. I worked that way through 1996. In the fall of 1996 I began teaching at one school predominantly because the work was steady. I worked 28 hours a week with about 4 weeks off each year. I had suspected that I had lupus for years, having all the symptoms but kidney failure. During that time I saw the same physician for 5 years who gave me a vague connective tissue diagnosis and maintained me on prednisone. At first the shots were every 3 months, then every two months; over the years I needed them more often.

In August 1998 I heard about Fibromyalgia, read about it, and realized that was what was wrong with me. I chose a physician from a list of referrals provided by the Fibromyalgia network. Not surprisingly the physician who previously treated me forwarded a very incomplete record not mentioning surgeries I had had or the prednisone dosage.

In the early months of 1998 I was diagnosed with partial simple seizures and began treatment on neurontin; dosage increased from 300 mgs a day to 1600mgs a day. Body pain was increasing, insomnia was worse; I began to lose my previously excellent memory. I ran red lights when I drove because I did not notice them. I realized I could not work 28 hours a week and changed jobs to one where I worked 12 hours a week. The bending involved in teaching computer classes was difficult; the stress became phenomenal as my brain fog led to lost tests and assignments or never knew if students were lying or not. I finally realized in December of 1999, that I could no longer work and am currently applying for disability.

While it is easy to focus on loss; I have gained an appreciation of things that perfectly healthy people may not notice. I have a wonderful husband who puts up with the fact that he not only earns the income, but does most of the housework, cooking, and laundry. I am bedridden about 30 percent of the time and housebound about 70 percent of the time. I walk slowly with a cane and anything more than 3 blocks is impossible. I have noticed how few of the subways in New York are handicapped accessible. Sixty steps in and out that NYC subway stations is generally the norm.

In financial terms having fibromyalgia has minimally cost me \\$250,000 in earnings; it has cost me in direct medical expenses, fees for car services, and in isolation. Some of the isolation has been over come by using the Internet and meeting people on a variety of bulletin boards who are similarly stricken. The isolation decreases although neck problems make it impossible to sit at the computer for more than an hour.

I have learned more patience than I ever thought I'd have. Every time someone says "I know someone with fibromyalgia and they don't have such a difficult time," I do not give into the temptation to smack them. Perhaps the number of years before diagnosis makes a difference; maybe the FMS strikes with varying severity. That would be a question research should answer.

Currently FMS is the third most frequently diagnosed disorder by Rheumatologists, yet research is under-funded. Although this disorder has been known about for nearly 100 years, having been called neuritis, neuralgia, and fibrositis, there is no clearcut understanding of what this disorder is; some physicians insist is purely muscular; others neuromuscular. Dr. Jay Goldstein posits that it is a neuro-immuno-endocrinological disorder. Some physicians say it is not progressive; yet my body is deteriorating. While I would love a cure-and I am not referring to the unproven and much publicized Chiari procedure, I would settle for an agreed on treatment regimen. Many people recommend warm water exercise and use of a hot tub or whirlpool; in New York City membership in a health club that provides those amenities costs more than \\$1200 annually; going to a support group is also not easy, nor is getting a physician's attention.

I see a rheumatologist, neurologist, and a pulmonologist, all of who know each other, and none of who ever discuss my case or treatment as a team. We need multi-faceted health care and we need centers where this can be provided.

We must call attention to our disorder and our needs! --Anne-Marie Vidal

I've had a heck of a time. My doctor, because I was on an HMO, refused to order tests that specialists said I needed. I've finally changed doctors and am having the bone density study next week that the endocrinologist said I needed four years ago. I'm on large doses of Synthroid and have hypocalcemia (low calcium) so am at high risk for this terrible condition.

Since being diagnosed with FMS, it has become a handy excuse for doctors to avoid investigating medical complaints. A herniated disk and stenosis in my spine was called "just fibro" for two years because my doctor didn't want to order an expensive MRI. If he had, maybe I wouldn't have needed back surgery later, who knows? Instead, when the disk herniated completely, I was left unable to stand or move my legs and had to be taken by ambulance to the hospital.

Since I didn't die, the HMO automatically denied the coverage. We had to file a grievance to get them to pay. It took them a year. Our insurance is "self-owned" by the City of Wichita so our State Insurance Commissioner's office cannot deal with complaints. We fall under the ERISA system and cannot sue for damages should we be injured by our insurance refusing a treatment or test. That should change if possible.

They need to be held accountable for withholding diagnostic exams and treatments that result in patient injury. The method of paying doctors needs revision as well so that doctors are not tempted to delay or refuse tests and treatments because it cuts into their profit.

It amazes me how doctors will write off a woman's complaint as "hormones", "menopause" or "depression" without ever having ruled out any other physical cause. My third bout of meningitis was also called "fibro" though I knew in my heart it was not. Because I argued with the doctor, he wrote in my chart that I had "marked anxiety." I wasn't anxious at all, I was mad at him for not listening to me. My husband drove me to the emergency room 4 hours later and a spinal tap confirmed that I did indeed have viral meningitis.

One day I began crying uncontrollably, felt as if my heart were racing and I was shaking all over. This is not typical behavior for me. When I called the doctor's office, they asked my symptoms. My Primary Care doc said I was having a "panic attack" and I should call a psychiatrist. My husband called him later to say I was worse and he wanted to take me to the ER. The doctor argued with him but Steve insisted I needed to be seen.

We must have a referral approval in order to be covered. At the ER, it was discovered that I had been over-medicated on Synthroid. My TSH dropped from 19.12 to <0.06 in only three weeks. My pulse was extremely high at 140. This was a serious medical condition, not a psychological one. I changed doctors because of it and chose a doctor at a large medical facility that is not so frightened by HMO's.

I hope something changes with HMO reform soon.

Thank you for your interest.

I can only describe FM as the worse pain I have ever experienced. It far exceeds childbirth, broken bones or any other pain. I have had the misfortune of having FM for more than 6 years and as others have said, I too, have lost relationships. My marriage of over 25 years went by the wayside as did a relationship of almost 4 years. Some people just can't seem to understand that FM is a crippling disease that doesn't have too many outward signs. Some family and friends just look at me and say that they don't understand why I don't get out more and do things, "You look healthy as a horse." Although I don't wish this stuff on anyone, these people need to have a good flare for a full 24 hrs. and then they would understand. I have Chronic Obstructive Pulmonary Disease, asthma and subject to bronchitis, not to mention the bladder, intestinal and osteoarthritis problems. I also have to take medication to constantly fight the pain and muscle spasms and also the depression. There are times when I feel that life as I have it just isn't worth living. I can't go out by myself even though I use a cane. I have to rely on my hubby to help me. I can go to the grocery if I know I can park close and get a shopping cart on which I can rely. I have ordered a three-wheel walker so that I can maybe become a little more independent. I can't play with my 2 year old granddaughter. This in itself is very frustrating and depressing. She doesn't understand why grandmother can't pick her up and do things with her like her other grandmother does. When I do have a good day and I take advantage of it, well the next day my @%& is dragging the ground and I don't have the strength to pick it up. So much for my story I could go on and on, but time and space just won't allow it.  [Name withheld per request.]