In March of last year, I got to meet Avis online. When she started to write to me, I had noticed that sometimes she repeated herself. On and off, I told her that she had told me different things already, and her reply was...it was Fibro Fog. I had no idea what it meant, and at that time did not ask her what she was talking about. A few more times after she kept repeating herself, I decided to ask what Fibro Fog was. She told me about it, and told me to go Angel Wings Forum, because this forum is about Fibro...which soon became a whole word to me...Fibromyalgia.

In the beginning I was clueless how this disease could cause someone to forget things that they had just told other people. I was curious and wanted to know more about it. I didn't come to AW ( Angel Wings) right away. I felt since I didn't have this disease that I didn't belong to the forum... but Avis wouldn't let me not decide not to go there. She talked of the forum all the time and said it was helpful to people like herself who have FM ...another term meaning .... Fibromyalgia.

I finally decided to go to The Angel Wings Forum to find out what is Fibromyalgia. First and foremost, there isn't any test to use to know if someone has it. Most of this disease is based on what the Dr is told. Many Drs believe it exists, others do not. Meaning, some believe the patient is hurting very bad and has multiple problems with it, or Goodies as they call it, as other medical problems are a part of it. Migraines, IBS, blurred vision, mood swings, forgetfulness, no sleep, constant pain, unbearable pain. Other Drs think it is all in their heads, and they are pychosymatic. There have been some studies on it, and it has been called by other names.

My understanding of this disease at this point is: It causes folks to forget either in a few minutes or later in time, things they have discussed with others. They really don't remember what they said to the other person(s). Because they forget, they tell the same thing to people as if it is the very first time they are telling them. There are also different thresholds of pain. Some hurt so bad, they can barely walk, and many are housebound, as going anywhere is just to painful to deal with. Others pain is less, and many can work with it. This disease which strikes many, always has some kind of pain with it, no one is ever painless with this disease. This disease usually strikes women, but I have encountered men in the forum who have it also. It seems this disease is started by stress that is unrelenting for a long period of time, and or a serious physical injury. Then there is depression, which makes many wonder why they should go on, or should they get up in the morning. Some are very devastated when in this type of depression, and many need outside medical help for medications or a physician to help them talk about the pain and the way they feel. This depression can last a while or a long time, depending on the pain, and the outlook on life. Those with this disease have had to alter their lifestyles drastically. Many who worked, can't. Some can but for a certain amount of time. Many come home totally exhausted, for those who do. Those who are housebound, a day with a bit of pain is a big accomplishment for them. Lack of sleep, the REM stage that helps the body renew itself, alludes people. They wake up as they did when they went to bed, exhausted. Many just can't fall asleep, must less get to sleep. Since this stage is never met, they aren't feeling good, they don't get good rest, they are cranky, upset, and just plain miserable. This goes on and on for a long period of time. Medications can help, but then again, it is what the patient can tolerate, and also to make sure they don't get overmedicated, or get medication interactions.

I was lucky last year to meet Cathia, who is also host of Angel Wings. When I met her I thought she looks ok, and that is what their families think too. If you look ok, you must be ok. But that was and is not the case. Cathia is house bound and goes out rarely. She has pain everyday, and it usually is at a certain pain threshold, there is never a day when she does not have pain. When stress or sickness comes to call on her, it gets worse. She then goes into what is called a flare...intense pain, almost zero to one to two hours of sleep. Miserable as all the other medical problems that go with Fibromyalgia are all kicked off together. Depression from not being able to do anything about situations, or being sick, makes one go into depression, and will last sometimes after the stress and or sickness has long gone.

Cathia and I talked about the trigger points on the body where one usually has sensitive touch. I felt a few on me, but she has them all. The Drs. who do believe in this disease will touch these spots to see how much pain is in each area. From what I understand also, Fibromyalgia also attacks the muscles of the body, the tendons and ligaments. So if someone were in a serious accident, you can imagine the contortions the body goes through when in that state, the whole body goes into shock and the whole body is messed up. Not only physically, including hormones out of whack, which also affect the whole person, but their mental and emotional state as well.

Cathia told me of the hours she worked and where she worked. She was always on the go, but once this disease hit her, she couldn't work anymore. Her husband is very supportive of her, and he and she do the household chores together. She does the easy ones; he does the hard ones. This way the house is kept up, but they are brought together as a team.

The most important thing I saw was the support Darrell gives Cahia and she gives him. They love each other very much, he understands how she feels and what is going on as he has chosen to be a part of that. He goes with her to the Dr etc, so they discuss everything not only concerning her condition, but all things. They talk to each other, and listen to what the other has to say, this relives the stress factor, and they also always take time to laugh each day.

I want to say something else here also. I don't have Fibromyalgia, but when meeting Cathia, if I hadn't known before hand that she has it, I would have known when I met her. For families who won't or can't relate, this is so stressful for those who have it. I myself worked in nursing homes, and it doesn't take a rocket scientist to know these people are hurting. Just to look in their eyes you can see, and I think those with loved ones just don't want to look for then they must deal with something that will never go away. Their lifestyles as well as those who have it must change and has to change. Many spouses argue and fight, saying to just get over it. If it were that simple, people wouldn’t have it, and the disease wouldn't exist. This disease is considered the invisible disease, as there hasn't been much awareness of it, or research done on it. Ignoring won't make it go away, if it were that simple a cure, everyone would no about it!

Fibromyalgia makes the whole body go out of alignment, never to return to its rightful state. For many getting out of bed can be excruciating...untold pains puts tears in ones eyes. Some can hardly stand up, or if they do, they fall down, and can't always get their body to cooperate to get back up again. This disease can and does make people who have it feel like strangers to themselves.

I want to say that not only in writing the petition but also in writing my story, I am able to help those at Angel Wings Forum who can't walk or get out of the house. I talk of this disease as much as I can, and to get people to listen. I wanted to share my story of the outside looking in.

I want to lastly say here, that everyone with this disease must, at all times have support. If it doesn’t come from family and friends, it must come from somewhere else. Angel Wings forum including the Host and Co-Host, have Fibromyalgia. There are nurses on the site also who have it. There is much information being posted on this disease as well as writings from many people with it. The awareness day for Fibromyalgia is May 12th, 2002. The walk for Fibromyalgia is May 11th, 2002 in Washington, DC. I add my story to get others to read it and know this is a real disease and real people are affected with it. Since finding this site, three people on my husbands side have since been diagnosed with it. No one is immune from it. It can and does happen to those we know.

Let's do research and lets find a cure!!

Thank You,
Mary Melito

I pray as you read this you will take to heart that I along with thousands of others

Letters and stories that you can take in consideration of the help that are needed for my mom (and those like her). I also pray to, that an emotional yet more spiritual energy feels you up to help us fight for our loved ones both in families and in friends.

Another day has entered and I ready myself for work. My mom diagnosed several years ago with Fibromyalgia syndrome and years before that at age 11 with scholiosis -that occurred from a major car crash (which resulted in the death of her grandmother) is again, lying on the sofa, not being able to have a night’s rest once more. With the heating pad to her back, prescriptions of all kinds from her doctors on the coffee table. The half-empty box of Kleenexes, some askew, from the tears of hurt and pain have once again kept her awake (How I pray at night for my mom to at least have a one night of full rest). I try hard to comprehend this pain, relating it to when I have what may seem as an excruciating migraine, having the flu/pneumonia (body ache), or even broken bones or that of a sprain. Yet, I feel inside that I know this is a much severe pain than I could imagine. Maybe if these pains continued for a long period of the day-It might be compared to. All the aches I have compared the pain my mom has always tried to describe to me is even hard for her-I can say though that there is a cure for that of the pains I described above. Those can be fixed or healed or take an aspirin and become better. Oh how I wish the doctors could prescribe hers that easy-but they tell her nothing. Just prescribe more drugs-which she is so tired of hearing and having to take. I see daily as it is hard for my mom to even get out of bed-and the government says that without a work/job history we can't give you disability. Bull!!-Some people -like my mom-have never been able to have that chance, for she would have loved to be able to work than have a pain that seems at days to drive you mad-even to thoughts of suicide. I cry when I hear my mom’s cries and how tired/drained she is for fighting just to deal with the pain one more day. Though she is strong and I am strong for her. Referring to my mothers accident at age 11,growing up in the poor class and being of little worth she was placed in a full body cast where she lied for 3 months then placed in a wheelchair to be sent home to take care of her 3 younger siblings.

The accident caused my mother dramatic trauma in not only having to deal with the loss of her favorite/only caring person (then in her life) but not knowing she was about to face a hard road of a pain that would lead to the disabling Fibromyalgia.

Today my mom deals with rejection from doctors because of lack of research, being looked at physically and told nothing is wrong, rejected from disability because she has never been able to hold down a job for long periods (but who wants someone working for them with scholiosis anyway). My mother has done her best in giving me a life I gratefully and truly appreciate. I have seen my mom struggle to make ends meet and always trying to be strong-minded- so that I will be. It angers me to see people with disability that are able to work, just to sorry to get out of bed when my mom at times can't. So many that can work, yet don't deserve a dime the disability gives them, for they are not disabled! A loving father supports my mom and me, receiving disability is only harder for her. For her weaknesses who would hire a person of mental and physical disabilities from working be considered more of a liability. I understand that being diagnosed with FMS, chronic pain, and other similar severities are coming to be more common all over the world in vast areas. I feel that studies, research, and tests desperately need to take place before citizens that have served our country and done so much for their jobs, family, and friends decide to give up! THEY DESERVE A CHANCE OF HELP & RELIEF!!! PLEASE! As I have seen from my mom, her not meaning to display thoughts- of actions to suicides-placing herself for help in emergency rooms, medical rehabs, and time and time again to doctors from all over seems to take her in a obstacle course, like clock work. With prayer everyday and night that the pain will ease her and others like her, I feel technology of today, surely, if given the o.k. Can do wonders-even find a cure- A MIRACLE!! My moms disability has made me, Mandy Wyatt, 22, choose in my heart to help Ann Wyatt, 41, and others with similar problems of aches or disturbing pain to seek a career in an area of Neuromuscular Massage Therapy, as well as Psychology. I also have researched on learning Nutrition and Fitness courses so I can better understand like conditions and help others to ease and live easier, healthier lives. Especially those like me that may have inherited such disabilities. In not knowing me or my mother and family I understand this may be another story. But I pray that you have some concerns in helping to heal this invisible plague that has entered so many families homes and changed lives of those with struggling hopes. WITHIN EACH SMALL HOPE IS A WILL AND A WAY-EVEN FOR A CURE!

Thank you for your time to listen,

Mandy Wyatt :)

Once again another day the host of a life shattering Villain, that I haven't chosen. But have to endure excrutiating chronic pain, fatigue, changing of my nervous system, and hormones, that I have to challenge with no control. This is not only frustrating but also financially draining, with no cure or scientific hope. The Doctors are very limited with lack of research that we all desperately need. All people need choices and opportunities. So Please acknowledge this so that we are INVISIBLE NO MORE

My personal experience with Fibromyalgia and chronic fatigue has been very demanding with full control; not achieving what life has to offer. From age 11, after a car accident, and now being 41years of age. My life has been nothing but a challenge to survive no career, no doctors, and no disability. Year after year with symptoms to only get worst. Isolating me from the world in no means would I have chosen this complicated path to be my life. The way I describe this is a bad case of the flu. All know that when this happens it takes over. But with medicine and rest it will run it course. Imagine never getting rid of it. Please help us regain our lives. I am tried of looking in a tunnel with no light, LET YOUR VOICES BE HEARD. Please I beg allow more funding for research so others don't have to face the dysfunctional life. I pray to die because of the severity of my condition. My prayers are with all suffers of this syndrome, and my congress that there will be immediate desire to HELP. Please allow us our identity not to be invisible.

With research there is HOPE.

Thank-you for your time, and make this worth ours.

Sincerely,
Jo Ann Wyatt