And the stories continue... One voice at a time. Won't you choose to add your voice to the list? Please feel free to write me anytime; I would be glad to answer any questions you may have, and would love to add your story to the list of voices choosing to be heard.

As you read this, you already know that I have Fibromyalgia which is indeed life changing for those who encounter it. Although most doctors seem to believe that this disease is brought on by trauma in one's life, I’m not sure just what that trauma was for me. I believe it could have been one of several falls I have had. I’ve had a couple of those over the last few years that easily could have been the trigger point for me. When my doctor first sent that diagnosis to my place of employment, I had never even heard the term, but I did know that my symptoms sure didn’t make any sense to me.

To this day I cannot remember all my symptoms in one doctor’s visit or even a phone call. So I will start with some of the most prevalent ones first. Then I will rest a while and try to make a list so that I can get them together for you as much as possible.

At the beginning of this year and for some years back, I was a long distance operator for one of the major telecommunications giants of the U.S. I had already had arthritis for years, so I was already on medication for that as well as high blood pressure medicine. Allergies are something I am bothered by twelve months a year. They have gotten worse this year. Sinus problems plague me. I suffer from migraine headaches. Brain fog set in so badly that many times I messed up the phone numbers I was supposed to be dialing for my customers. Customers sometimes change the numbers also after the first time they tell the operator, but I realized that a lot of it was my fault. My brain and fingers didn’t seem to comprehend what the customer was saying at all. It was very upsetting. I hated that for the sake of my employer plus I was deeply upset about it myself. My desire was to be a top-notch operator. It just wasn’t something you could do incorrectly time and time again.

As already stated, arthritis in my lower back has been a source of almost constant pain for years. I do take arthritis medicine for it and because of that medicine; I also have to take stomach medicine in order to tolerate the arthritis medicine. I have had IBS for a great number of years also. It never leaves, but fortunately, it does let us part of the time. For the past few years, I have also had trouble with pains, stiffness in my hands and fingers as well as my knees. There are days my legs just ache and ache all day. Perhaps the craziest thing is that my feet hurt. at times…..even my toes hurt. It is almost unbelievable to me, but unfortunately, it is also reality for me. My muscles yell if they believe they have been overtaxed which seems to happen rather frequently. I get cramps some in my legs and feet, but I believe the worms that (seemingly) crawl under my skin as well as the muscle spasms are worse. If I do more exercise like walk, lift a slight bit more weight than usual my muscles protest (arms, shoulders, upper back).

Early in February of 2000, I was in so much pain plus my brain fog was so severe that I knew I just couldn’t continue the remainder of the day at work. I didn’t feel well enough to even sit up all day let alone try to work. In the middle of the day, I had to ask to leave. My immediate supervisor was already well aware that I had some major difficulties with my health. Therefore she would not allow me to even drive myself home from work. She brought me home herself. That has been over six months ago. No longer am I on the employer’s active list of employees. I am, however, waiting word on Long Term Disability and Social Security Disability. It is difficult to wait for funds to live on, but there is nothing else I can do.

I spend a lot of time resting because I have to do that for myself. Every day is somewhat different than the day before. It is frustrating. I may have one good day and then five bad days and on and on I could go. But hopefully you have begun to understand. It is a daily battle with pain and with brain fog. I interchange correct words with incorrect words such as I may get the subject and the verb backward or if the sentence has an object at the end, I may interchange them and not even realize that I have done so. If I try to write in a hurry, it is amazing at what really gets said and in an order in which I didn’t mean to say it.

There have been many trips to the doctors office and to the Neurologist’s office. There have been and continue to be tests and medicine. Questions are many. The answers come slowly.

This story is not complete because there is no way that I can remember it all in one or even several attempts. It is all I can think of at this time.

The sad part is I am only one person out of many more people out there who suffer from the exact same symptoms. Granted there is a difference. Some are not as bad as I am yet. Others are worse. Some are quite young {{{{{{some even in college}}}}}}. A number of them are older, but we share a common bond – Pain. Oh, the Pain and the Fog are bad. I hope you nor anyone in your Family ever have to experience it. If you help us now, you may be helping yourself and your own family down the road.

Thank you for giving me the opportunity to share my incomplete story with you.

I need to tell you of my plight and the effect it has on my family, my place in society, and my life. I was once a vibrant healthy, athletic individual, who didn't include the phrase "I can't" in my vocabulary. I was raising two wonderful children, working two jobs, and of course, keeping the home fires burning. No More! Now, after 3 years of testing, including the medical bills I am still paying for, I was finally diagnosed with Fibromyalgia and all the complications that accompany it. Currently, there is no insurance company that will cover me, even as a gap policy to my Medicare. Every extra penny I have goes to my medicines, and my doctor. For the insurance matter, it is also of great importance, and needs your full attention. Congressmen, I have beautiful, intelligent children, both of whom graduate high school this year. My daughter has always been an honors student, and has been accepted into a very prestigious college. However, my husband and I are frantic as to how we are going to fund her education. My plan had always been to work, and put her in the best academic environment I could. Senator Paul Tribble, has made this possible and close to home.

Christopher Newport University college has a wonderful academic, enriching experience, and therefore, it is an opportunity that just cannot be missed for such a bright young lady, who will one day be a leading member of society. But now we have to desperately search for funds to do so, because of my illness. Fibromyalgia controls every minute of my life. My children need/want me to participate in their programs. I have to now respond with "we will have to wait until that day, and see if I can". Which I am certain, breaks their hearts. I suffer most from the effects Fibromyalgia has had on my children. As they were accustomed, in the past to, "my Mom can do anything". This disease, has let them down. It has taken me years to possibly overcome the feeling that I, personally was letting them down, and in reality, I am not sure I have overcome that feeling. Not only for the children, but for my family and my aging mother.

I suffer with extreme frustration, from not being out of pain or being fatigued long enough to be active, to be able to exercise, to socialize, to participate with my children, and to function with just regular household chores, or hold my place in society, nor plan anything in advance. Due to my condition, I have had to place my beloved mother in a convalecsent home. I am no longer able to care for her!! My unaware/uneducated acquaintances,(no real friends left) can not believe that while I am having a good moment now, the next moment is disabling. There are so few "good moments" that I actually log and look back and cherish when I had one. Just to give me hope, to wait for another "good moment" and hang on, thinking that I may have another one sometime. Therefore, I have no standing in society any more, and have made it a point now, to not tell anyone of my disease, because the general public is so uneducated about Fibromyalgia. Most want to contribute my weaknesses to aging, psychiatric problems, colds, flu, injuries, and the list goes on. Because they all are UNAWARE. Much like we were about many other diseases, years ago. What I have want is to be better, to be my original "I can do anything" self again. To be able to handle anything that comes my way. This is the person that everyone knew me to be. I have become steadily worse. New symptoms appear almost monthly. I have lost my self esteem and my dignity. All the related illnesses to Fibromyalgia, are not obvious to others. It's invisible, and only I can feel it. Only when I am so frozen in pain, or fatigued to the point that it is impossible to hold my own head up, or reduced to my knees or the floor, does anyone see! Because of those factors, I have felt ridiculed, misunderstood, and mainly doubted, because I have no affliction that is apparent to society.

Congressmen, I have lost my place in society, which I know, that if I were healthy, I would be a substantial asset. My doctor does the best he can to keep me comfortable. Although, I realize by his treatments, that he also is very perplexed by this disease. We have been through a gambit of medications, all of which either didn't work, or I had such horrible reactions to, that I became worse. But he does the best he can with the limited amount of knowledge he has at his disposal, due to lack of research. At this point, I spend a great deal of my days, and nights, in constant pain. It has taken me many doctors and several days of concentration just to relay the message, that the pain/fatigue/frustration causes me to be depressed. Not the depression causing the pain. At least I have crossed that hurdle with a couple of my doctors, but with none of my acquaintances. In closing, please, Please!, give us the appropriation to further investigate this disease, to find a cure, to know why we have it, to understand how to manage it. Anything at this point would be better than where I sit now. Please give the scientist the funding, in order that they may be able to give me/us, a way to fight back! Otherwise, I feel this disease will just continue to grow, and it is not much of a life, when my only constant companion is Fibromyalgia!

Congressmen, I could go on about the many other affects this disease has had on me, all detrimental, not only to myself, but to my wonderful family. I must let you know, that this disease, being that it is invisible, has had a high toll on many marriages, which are the foundations to our children's success, in my opinion.

Do not let Fibromyalgia carry on, and research not being funded for it, nor let it be unrecognized by the medical community as a true illness. Help us, help others, to understand that this is a disease that needs attention now! Please do not wait until the next generation is where I am, and writing to you again.

Thank You for your attention,
Annette J. Church

My Life with FMS/CFIDS

I am a 46-year-old woman. 2 years ago, I was a career woman. In a 5 month time period, I went from being a functional adult to being completely disabled and on Social Security. I have lost my job, home, friends and some of my family, because no one understands my illnesses.

I spent months in bed with pain so bad, I could not have a breath of relief. Finally, I found a pain doctor who has treated me with morphine so I can now bathe, clean and cook light meals. It was hard to find medical help, as no one understands the pain levels these illnesses can reach. I am lucky; I have read about many others that have committed suicide because they never found the pain relief they needed.

My life now…I spend praying.
Dawn Hughes

Before FMS, I held a supervisor job. I came home, cleaned house, canned food from our garden I helped raise; went fishing, camping, etc. The FMS started and I was in too much pain to work. The place I worked tried to accommodate my handicaps, raising the desk, supplying a high chair, etc. It worked approximately a year, then the brain fog came - I think they were sad/happy I quit from the pain. I can not hold a job now because when the brain fog comes, I can't remember what I have done with things. Now I struggle to clean 2 small bathrooms (self-imposed duties to feel useful). I must take a nap after cleaning one bathroom due to fatigue. My daughter cleans, cooks and cares for us. If I go shopping, it must be in a wheelchair as I can not stand for more than 5 minutes due to the pain and fatigue. Someone has to keep track of my medication because I don't always remember whether I have taken it or not.

Ethel Burdine

I am 25 years old and I am sick.

Before I got sick, I was athletic. I modeled. I was an honor student at school and had my dream career. I excelled in my position working for the State, allowing me a long beach walk each lunch break. My high school sweet heart became my fiance, we were planning a family. My biggest worry was which investment groups were showing returns.

Today, I laid in bed and ate a popsicle. I was eating cereal, but I had a tremor and spilt the entire bowl on myself. I haven't worked a full week in over 9 months. I had to drop out of college. I gained over 100 pounds. I have over 6 medical appointments a week. My fiance left me, and my parents and I fight all the time. Mostly about the doctors I see and the treatments I try. I haven't seen my friends in almost a year. Every moment I worry how much longer I can continue to care for myself.

My family, friends and work love me, but they don't understand that I would try anything to have my life back.