My battle with FMS began in '97 when I left my job because of extreme pain in my lower back and hip. Originally I thought it was from a fall I had taken in '94. Over three years the pain increased to the point that I had to get medical attention. All medical attention was of no help.

The real battle began in Sept. '99 when I had to quit yet another job. This time I was working three hours a day, five days a week at a fast food chain. After a month of being employed I was in so much pain I had no choice but to leave. I went to my doctor to see what exactly was going on. He ordered an MRI which came back normal. So he sent me on to a specialist who sent me for eight weeks of physical therapy. The physical therapy did not help either. From there I went to a Back Specialist who had no clue what was going on with me.

In the meantime I had applied for Social Security Disability and had seen a Social Security Doctor. He was right on the money with what was going on with me but could do nothing for me, being it was a conflict of interest. This is when the question of FMS came up for me. I had read an article in a magazine in a dentist's office and thought "Man, that sounds an awful lot like me".

I presented the question of FMS to the Back Specialist I had seen. Because he didn't know what to do for me he sent me to a rheumatologist. The experience with this rheumatologist was the worst experience with a doctor I had ever had. He flat out told me I did not have FMS, and that I was using my condition as an excuse to not do anything. I left his office in tears, I cried all the way home. At this point I didn't know what to do. I was in so much pain I couldn't do hardly anything, I was sick of going to doctors and not getting any answers. My family doctor believed what the rheumatologist said and wouldn't send me for a second opinion. So, I went to an Internalist. I told him all that I had been through. He ordered more blood work and finally gave me a diagnosis of fatigue and FMS, with possibility of Lupus. Real specific, huh. Finally in February, I went back to my doctor and explained to him the pain wasn't just in my back it was all over my body and he finally sent me for a second rheumatologist's opinion. Throughout all this I began to do research of my own on FMS, using the Internet mainly. I found lists of symptoms, explanations of FMS, names of doctors who treated FMS. I read a couple of books on FMS. From what I researched I was sure this is what I had. I went to Dr. Freeman in Elmira who confirmed the FMS diagnosis.

The main reason for sharing my story is to create awareness of this Syndrome. After my experiences with the doctors and all that I went through just to get the diagnosis, I believe it is important that those of us who suffer from this syndrome need to have our voices heard. Not only in Washington but by those who don't believe this "syndrome" really exists. This syndrome effects every area of the lives of those who suffer from it. From the ability to work and function normally on a day to day basis. I have gone from a woman who worked 40 hours a week, who exercised and walked almost daily, to a woman who is lucky if she can walk a block without pain. I would specifically like to address those who don't believe this syndrome is "real". I would invite you to spend just one day with someone who suffers from this syndrome. To see the "unreal" pain and agony we suffer. To see the "unreal" side effects of doctors who don't believe your story. To see the "unreal" effect it has on our family and friends who don't understand. They say depression is part of FMS, I believe half the depression comes from being misunderstood and not listened to because someone thinks they know us better than we know ourselves and our situation. Just so they may see just how "unreal" this syndrome is.

To those who suffer from this syndrome, don't believe it when a doctor tells you it's not real. What you are going through is real. You will learn how to function with this syndrome.

The greatest strength I've found is in my Lord, Jesus Christ. When I was going through all that I had to go through with the doctors and all the words "My grace is sufficient for thee..." 2nd Corinthians 12:9 , kept coming back to me time and time again. This gave me assurance that I was on the right track. You persevere through this and stick to what you believe in. I've also found strength and support from others who have this syndrome. Talk to others who understand. You are not alone in this. We are many who suffer from FMS. If we stick together maybe one day those that don't believe will come to understand just how real this syndrome is.

In closing I would like to thank those who put in the effort to create the awareness that people need to understand FMS. May the Lord bless your efforts and give you strength to stand and fight for us who suffer from this. May we all stand together and be heard. It is not easy doing what you do with the pain you face everyday. If we all do a little bit we will be heard. Thank you again.

Tamara VanVleck.

((((((Mimi))))))))

I'm just sitting here bawling. I admire you so much. I wish I could go to DC and get someone to listen. In the past month, 3 more of my fibro-friends have been diagnosed with Lupus and other autoimmune diseases. The diagnosis of FMS, along with my family history of autoimmune diseases, for me, has become a Sword Of Damocles hanging over my head. Each day I wake up waiting for the other shoe to drop. What disease will *I* get next?

If I could make a wish and have it come true regarding FMS. I would like to see a standard of care established for every patient diagnosed with FMS. I'd like for it to include routine screening every 6 months to include CBC, UA, ANA, RA, SedRate, TSH, Free T4, Free T3, Chem Profile, Gamma Globulin, and 24 hour UA, including adrenal functions. Initial diagnostic tests should include screening for Adrenal diseases, thyroid antibodies, Epstein-Barr and Mononucleosis.

When patients fail to improve with medication the next step should be MRI of the brain and full spine to rule out such conditions as stenosis, Chiari and degenerative disk disease. MRI's should be repeated at intervals no less than 5 years apart if patients continue to decline because these doctors keep telling us that FMS is NOT degenerative. Well...I beg to differ, either it is, or I have some other problem that's being overlooked due to the expense of testing. I'd like to see FDA approval of testing for APA Assays so that those of us who have had our incomes wiped out following our inability to work can get insurance coverage for this.

I'd like to see it made against the law for HMO's and employers to force us to discontinue care with our mental health providers. It takes time to develop trust and report with a psychiatrist, psychologist or Social Worker. I lost my psychiatrist when my insurance coverage changed at the first of the year. I'd been seeing him for 3 years. Oh, I can see him if I want to, they just won't pay for it and I can't afford the out-of-pocket expense. My TSH is on the move again and it wreaks havoc on my psyche. I need to talk to someone who isn't going to panic and lock me in the psych ward when I tell them I sat up half the night crying and fantasizing about slitting my wrists in the middle of the doctor's waiting room just to illustrate my level of fear, frustration and pain. Who can I tell this too now? Only my fellow sufferers understand that this isn't a suicide threat, it's anger, it's fear, it's frustration, not a cry for help, but a cry for ACTION!!! Who else can understand that I'm depressed because of pain, not in pain because I'm depressed?

Until the medical community recognizes that FMS is a red flag of worse things to come, none of us will get decent care... None of us will get a timely diagnosis BEFORE disease has done irreparable harm to our bodies. For me, the lowest point was when I was begging my Primary Care Physician for more tests and more therapy so I could get well and go back to work and he told me, "It's not cost-effective." To me, this means that I have no value as a human. He has as much as said that I don't have a right to be well.

I'd like for those in DC to know that it wasn't "cost-effective" for me to loose my job, a car, and my good credit and to go through bankruptcy. It's not "cost-effective" for my children to be without a father who is working TWO jobs, seven days a week to make ends meet. It's not "cost-effective" to live on a Social Security check that is HALF what I could have made working part time if I could have only gotten well enough. I can NEVER go back to my career now. I was unable to keep up my Continuing Education due to the cognitive impairment of FMS. If I ever get well, I'll have to find some other line of work. I can't even go back to school, can't walk the distance on the college campus, can't retain anything I read or hear. I'm stuck in a cycle of dependency on others now. Tell those in DC to hear our plea, set standards, do research and pass laws protecting us from the insurance company's greed and the doctors who submit to their limitations of care. Tell them to remove mental health care from the Socialized Medicine merry-go-round. Tell those in DC that the 5 entities who tax us take a full 40% of the money we earn and if they didn't I could afford to go outside of my HMO plan for GOOD care. We're not rich, but after everyone in the government takes what they think is their share of my husband's check ...well.... That's another battle. But at this point, if I could work, I'd be less concerned about how much the government takes away from me and gives to people who study why moles kill their offspring instead of why 5% of Americans are disabled by a disease (yes, a DISEASE) that can't be seen, can't be tested for, and can't be cured.

Nikki Hipps
Wichita, KS
Disabled by FMS since May 1996

Denial is a defense mechanism I had never chosen to use. I had always met my problems straight on. I considered denial a sign of weakness. Today it is my strength. If I did not live in denial about what fibro has done to my life, I would have little reason to live. I will put aside my denial while I tell you my story.

I'm a teacher. Fibro took my classroom, but I am still a teacher. It is in my blood. I was born to teach. I had some problems with pain off and on, but my classroom was my analgesic. When the kids came in, they came first. Pain was second. The last couple of years I taught I was hit with fatigue. I could barely drag myself to school, but when the kids came in I was all smiles and energy until they left when I would drop. My last year it was flu season when I caught a mild case. Even though it was mild, I couldn't recover. I tried to go back to work, but I was too tired, weak, and dizzy. I spent the next three months in the "twilight zone". I was half asleep all the time. I had to drive 6 miles to my doctor. In spite of the fact it was winter and temperatures were around zero, I drove with the air conditioning on, slapping myself in the face the entire way to keep awake. I would get groceries on the way home, things I could microwave since every I tried to cook I would get tired, sit for a few minutes, and start a kitchen fire. I used disposable glasses, dishes, and table service being too tired to wash dishes. I made an appointment with a psychologist in March. I thought it had to be all in my head since I never took sick days. I had the maximum allowable in our school district, 120 days. When I walked into her office she took one look at me and said,"What are you doing here? You are sick. You should be seeing a doctor." I think my doctor believed it too, but he couldn't give me any answers. He sent me to specialists for tests. I could see in their eyes that they thought I was a hypochondriac. I tried visiting my class at school. They were thrilled to see me, but it pained me greatly not to be their teacher any longer. Their noise and activity level grated on my nerves as well as increasing my vertigo. I still visited about once a week as I missed them terribly.

When my sick days ran out my disability kicked in. They required that I file for Social Security. I didn't want to do it as I was going to get well and be able to return to work. I had trouble steadying my hand long enough to sign the documents. I had to quit writing checks in stores. After filling out the top part my hand would quit working. My signature wouldn't be legible.

I had finally accepted the fact that I would not be returning to work, but Social Security kept turning me down. I was 4 months away from early retirement. I was scared not knowing how I would support myself. I watched the people in Bosnia dodge bullets just to get water and realized my life could be a lot worse. My doctor said I had something like chronic fatigue only I didn't have a sore throat. My friends were busy teaching, my neighbors thought I was faking. I badly wanted a support group. I heard of a fibro group 45 minutes away that would that chronic fatigue. I went After a couple of meetings and hearing my life described over and over I knew I belonged. I still could not get a diagnosis. I finally tricked my allergist into saying the words. While many people consider fibro a terrible diagnosis with little hope, the condition was already there. I was grateful to finally have a name for it after years of tests and no answers.

After living off savings for a couple of months, my Social Security case went before a judge. At that point I didn't care if people though I was mentally ill. I knew I wasn't, and I needed financial help no matter what label I had to swallow. After that teacher disability retirement followed. I had hoped that when the stress of money was gone I would get better. I did a little but not significantly. When I have a special occasion. I set my hair and do make-up, but it takes all day and wears me out.

My dreams of an active retirement are gone, but I still am a valuable human being. Sometimes it is only giving others who are not as disabled as I am the courage to keep going. I also lead a local fibro support group. I try to do as much as I can to help others as that is my true joy. Fibro may be a handicap, but it is not the end of life.

Dear Melanie,

I just read your posting on tidalweb. I am new to the site in the past month or so and would like to become active in the fight for research and adequate help for fibromyalgia. I am a 51 year old grandmother who teaches first grade and will be retiring in two years. I developed fibromyalgia 7 years ago following the sudden death of my 36 year old brother. I have probably had it for much longer than that as I was constantly having problems that frequently sent me to the chiropractor. Plus I have not slept well for years. But the daily pain was triggered by my brother's death. His 19 year old daughter was recently diagnosed with a severe case of fibro and I have 2 other nieces that show the symptoms as well as an aunt in her 60's. So there is definitiely a genetic tendency for this disease. We all also have irritable bowel problems, asthma, and migraine headaches as well as problems sleeping.

I decided early on that this disease was not going to control my life and so far I have managed to stay on top of it. I have never missed school due to the flare ups although I have worked through some pretty serious flares. I was off for three months two years ago due to a spinal fusion that I almost waited to long to get. I do low impact aerobics five days a week and unless I am in a flare I also lift light weights. The fibromyalgia has gotten worse the past two years since I started menopause, but I still keep moving. I am one of the lucky ones who has very good insurance that covers my physical therapy which I get most of the school year. The craniosacral treatments have done wonders for me. The hands on treatments help the most- more than the medications. I have one major complaint about insurance coverage in that most does not cover massotherapy. The right kind of massage gives the most pain relief of anything and I feel that insurance companies should cover this form of treatment as long as you have a doctor's script and go to a licensed massotherapist.

I am not depressed and antidepressants cause me more problems than they help. I have a happy and fullfiling life with a wonderful family and support group. Why do so many doctor's still try to tell those of us with this disease that it is all in our heads? Most people develop the depression after the fibro because of having to live in constant pain with little relief. It is a crime to let people suffer with such horrible pain and not give them the medications needed to control it when it has been proven that very few fibromyalgia patients ever develop addictions to these pain medications. I am one of the lucky ones in that I am able to get by with occasional use of Ultram and lidocaine patches during flares and the use of Ambien and Soma 4 nights a week for sleep. But for so many others this does not even come close to touching their pain. Some fibro patients even had contacted Dr. Kervorkian their pain was so bad!

I am so lucky in that I have fantastic doctors and physical therapists who never once told me this pain was all in my head and have worked with me to develop a plan that works for me. It took several years to find the medications that would help me without intolerable side effects, but thanks to my doctors I have found what gives me considerable relief. I do not sit back and expect the medical profession to do it all- I am very active in researching and developing answers for myself also. I use Qi gong and guided imagery to help deal with the stress of my job and the fibro. I try to eat right and exercise and lead a healthy lifestyle. More needs to be done to find out what causes this awful life-altering disease and how to control it better. I never miss voting and I will be watching and listening to which of my congressmen tries to help us in this cause. And I will let others know also. Together we can fight and conquer this curse of fibromyalgia! God bless all of you who join the fight!

Sue DeVecka

I am 32 and was diagnosed as having Fibromyalgia in January 2000. My illness began gradually in 1999. I noticed that spring and summer every time I turned around I had a sore muscle somewhere. I thought it was strange because I was always very active and exercised moderately a few times a week. I didn't say anything to anyone because I was afraid. Then late in the summer I hurt my right shoulder. I did at this point tell my doctor I thought it was strange that I felt like I kept injuring myself and I constantly had sore muscles.

The fatigue had not hit me as of yet. The doctor dismissed my complaint but did treat my shoulder as a pulled muscle. Well to this day (two years later) my shoulder is a major source of chronic pain. By autumn of 1999 I completely crashed. In October I went to the doctor in a huge amount of pain and exhausted. I could barely get one foot in front of the other. So she sent me on the great doctor merry-go-round.

In two months I saw about four different doctors, went through many blood tests, x-rays, various MRI's. I even had one doctor try to convince me my gallbladder had to come out, which another doctor said no he's crazy. Then one horrid day in January I could barely get out of bed. I had to get my husband to help me. I was in so much pain that my skin hurt. I could not tolerate the shower water touching my skin. My equilibrium was off so bad I could not walk in a straight line. Even now when I sneeze I lose my equilibrium. That day I decided to get an answer.

I went to the emergency room at the hospital. After spending about six hours there and having blood tests and a CAT Scan finally a neurologist was called in. Within the hour he had a diagnoses for me. FIBROMYALGIA. Thank goodness for that doctor. I finally had a name to give those people that thought I was becoming a hypochondriac. I immediately started searching for all the info. I could find on the illness that I hid for a long time.

I was shocked at how little support I got from the people who'd known me for many, many years. Mainly because of the invisibility curse. If they can't see it it must not be there. I felt like I was on an island alone alot of times. Within the last year I have lost my full time position with the pet care business I've been with for 16 years. I lost my health insurance through the business. I am currently homeless because I lost my home that was provided by the business that was to be my very own when I retired.

I am not going to give up. I have found a good support group of others with FMS, I found a good therapist, and a doctor I can trust. I am currently in a vocational rehab program thru the Dept. of Labor. In October I return to school to learn medical transcription so I can start a home based business. That is when I find a home. Thank you for your time.

Stacey Porter

I am glad to see someone taking action for this terrible illness, that is called Fibromyalgia. I like many others would love to be strong enough to be in your shoes. We are blessed to have you fighting for our illness. I have always had problems with my legs. When I was little I had to wear special shoes for I had bad balance or weak ankles, I never knew which it was or if it was both, and I was always clumsy through out life. I could trip and bang into things that are right in front of me, and I still do. I have had my eyes tested and they were always 20 20 vision. At times I had allergy, and I would get little bubbles in my eyes. I am also sensitive to light, and have blurred vision off and on. I also like dark quite places at times, for some noise would hurt my ears such as balloons popping, fireworks, and even openning a can of biscuits. I also had a problem running, and running track was not for me in school. I loved to walk a lot as a child. I still would love to take long walks, but it would be to painfull for me to walk long distances now. I get to much pain in my legs at night, even if I stretch my legs before and after walking. I have tried taking hot Epsom salt baths after walking, but it is the same story, I would want to chop off my legs at night when the pain set in. For years I thought that I had arthritis in my legs. I always had to wear shoes that wouldn't put a lot of stress on my legs.

When I was in school I would always go to sleep, and it was hard to stay focused while in class. I was a straight D and F student. I could never understand what was going on in class. I don't know how I made it to 9th grade, but I did fail in 2nd an 5th grades. I gave up and quit in my freshman year.

For years I could never understand what my problem was, I couldn't do stairs with out hurting while going up them. Coming back down stairs isn't as hard on me. I just related this to having bad or weak ankles. I would have back pains off and on and I thought it was due to lifting to much at times. I went to a neurologist when having back pain and I asked him about my leggs hurting. He told me that it was something like arthritis, and that all I could do is take a hot bath, wrap them up, or go to sleep, well this I already knew so I just threw it out of my head and went on with my life hurting.

I didn't ask a Dr about my leg pain until I couldn't do my part time job any more due to the pain and lack of sleep. I have already been to my DR. for some back pain earlier that year and now I was having severe leg pain at night along with hot flashes. I was so worried about my hot flashes when she said wait, lets check out your legs hurting first. She had so many test run on me to see what it may not be, for she told me that she thinks that I have fibromyalgia. The test all came back negative. She then wanted me to see a orthopedic to get a second opinion on it being Fibromyalgia. It turned out that it was Fibromyalgia.

I had tried so many different medicines to see what would help ease the pain and to help me to get a full night sleep. The medicines did not help, all they did was to flare up my ulcers and which I forgot to inform the Dr's that I had from years ago. I then was having spasms in my stomach from vomiting so much.

I was starting to get more trigger points on my body, and now it is to the point that if my husband touches parts of my body that it feels like needles poking me. My little dog that weighs 18 lbs likes to lay next to me and I have to move her away from my body for it hurts having her body next to mine. I also have times when I think that my heart is hurting, but it is muscle spasms in my chest area and it hurts trying to take little breaths at a time until it goes away. I have ringing in my ears. At times the ringing is loud and others it is soft.

So this is some of my problems that I have had to deal with through out my life, and I am now 45 years of age. This is my cry out to you to please help find the cure for Fibromyalgia.

Debra Douglas

My name is Faye, I am a 34 year old mother of 5 and I live in Minnesota. In 1995 I started having overall pain and stiffness. It wasn't until 1997 that I was diagnosed with Fibromyalgia, After having doctors tell me for two years it "was all in my head". I not only live with FMS/CFS, I also have chronic dizzy problems. My doctors are unable to diagnose me on that and have been unable to since I was diagnosed with FMS. Along with many other symptoms.

I am unable to work, drive, pay bills, grocery shop for my family, go to appts by myself, etc.

I applied for SSI/disability twice and was denied both times. They came to the conclusion that I wasn't totally disabled. I wish they could walk in my shoes for a day. I wonder how they would then see themselves. So I am totally dependent on my husbands' income now.

Fibromyalgia IS a real disease and needs to be recognized like any other disease. Only then will it put an end to ignorance.

Sincerely,
Faye Enno

Until I was diagnosed with fibromyalgia, approximately two years ago, I had not even heard of it. My husband and I were seeing a counselor, and when I mentioned pain, she suggested that I get checked out for FMS. I had no idea what she was talking about, so I went to the internet, to do some research. Wow, what an eye opener that was. When I read the first article about FMS, I swear my picture was there...lol. I had been self diagnosing all of my symptoms for about ten years. Never realizing there was an actual disease for all of those symptoms combined in one disease, I had separated each individual symptom as it own problem. The pain in joints, arthritis; the stomach problems, hiatus hernia; the headaches, migraines; the neck & shoulder stiffness, stress; the chest pains, just one of those things; etc; etc.

I have never really been a person to run to the doctor for things, so I had an answer for all of the symptoms. Little did I know. The information that I first found on the internet, stated that FMS could be secondary to lupus, diabetes, cancer, etc., and since all of these diseases are in my family, I decided to go ahead & get it checked out by a doctor(Remember, I'm not one of those people who runs to a doctor for everything). So, I made an appointment with my family doctor. I approached the doctor, with my findings in hand, and basically said to him, "this is what I have, I just want to make sure I don't have any of these other primary diseases". Well, we proceeded to discuss my symptoms, and did the blood test to weed out everything else. Before getting the results, he prescribed me a weak dosage of some anti-depressant, to treat the pain, which at that time had become unbearable. Guess I was going through a flare-up. Wouldn't have even understood what that meant at the time, but had been experiencing it for years.

I do believe though, that at that point it had gotten progressively worse. Then the doctor went on vacation, and it took me two weeks to get the results of my blood test. Everything, except my cholesterol turned out negative. Yes, it was a relief to find I didn't have any of those other diseases, however, I didn't feel diagnosed either. I felt as though my doctor just agreed with me that FMS was what I had, because I said so. This was a very depressing feeling. I felt like I was still unsure that FMS was indeed what was wrong with me. If I wasn't sure myself, how could I expect my loved ones to believe I had it, though I never shared with them the doubts I felt inside. I just told them that I had it, and basically, nothing has been mentioned about it since.

I took the meds prescribed, and after about two weeks, they started to kick in. That was the best I had felt in ten years. Well, that lasted for about a month. I called the doctor's office to either increase the dosage, or try another medication, and was told that he wouldn't change the meds until I came in to see him again. I haven't been back. Since I lost my insurance, I have not received any treatment for my FMS.

It has been a long hard struggle ever since. But, at least finally in my mind, I know what is wrong with me, though that doesn't bring much comfort. I can't think of one part of the body, that this terrible disease doesn't affect.

Since none of my family has taken any interest in finding out about FMS, and just pretends it doesn't exist, I do my best to do the same. I am still expected to function the same way I did before FMS. Some days, it is difficult for me to even get out of bed. But, because no one can see my pain, I am accused of just being lazy or boring, if I don't want to do anything. So, needless to say, I just push myself as hard as I can, to function normally. For me personally, the hardest part of FMS, is feeling as though no one cares. I have a very high tolerance for pain, thank God, but the pain of feeling alone, is sometimes more than I can take.

So, to those in Congress, the Senate, and the powers that be, please help those of us who suffer with this disease. If you had to live with it for just one day, something would be done about it immediately, I guarantee you that. Don't turn us away, who need the help, please. By the way, it even affects our thinking. I use to be a great speller, and now sometimes struggle with even the simplest words. Forgive me, if you find any misspellings in here. I did run a spell check however..lol. Wow, good thing I did have spell check. That was pretty bad.

God Bless You in advance, for your support on this matter.

Please Help!
Sincerely,
Elsie Stoltz