Jan M.: I think the worst part is not knowing if you are able to get out of bed or even be able to stay in bed because of the pain. We used to ride motorcycles and I feel I have let my husband down because he loves to ride, but I can't most of the time. I think that the worst part is all the things you could do now you can't.

Bonnie P.: I have lived a life of pain, but FM, being an invisible illness, it's easy to hide behind a smile and, a sense of humor. It is a disability! Fibromyalgia is a very painful disease. … I think I would have been a very out going person, but instead I've had to stay in the background, worrying if I might have to find a bathroom in a hurry, or develop a migraine at a public place, or on a plane, or boat while on vacation. I'm in my own prison. The pain is never ending! My faith in God has kept me from suicide many times.

Bridget P. K.: Having FMS is a daily struggle to accomplish the things you want/need to do. However, the holidays are worse. This past Christmas Eve was particularly hard for my family. I had started having a flare on the 23rd. On Christmas Eve I lay on the sofa in tears because I've not yet received the medical treatment that I feel I deserve. This is the case with many that suffer from FMS.

Not being able to participate in the family traditions, go grocery shopping, drive, sweep, fold laundry... so many everyday things that most take for granted. Just because I look fine doesn't mean that I AM FINE! I am a physical disaster struggling to make it through another day. Through all of the pain I always try and muster up a smile for those I pass. I seldom complain because I DO LOOK FINE and who wants to see a seemingly healthy person complain? …don't judge a book by the cover...

Victoria E.: …all of a sudden, I can't climb the stairs without losing breath. Nor walk some distance without resting or feeling pain. I wake up most mornings with the flu-like feeling-brainfogged, fatigued, achy all over, dizzy and nauseous at times, with low-grade fevers, nonrestorative headaches, short-term memory loss, numbness in the extremities to mention a few. Then too, I kept off from friends. I no longer wanted to go to any parties or meetings. I was too tired and too sapped in energy and interest to do anything except staying in bed and sleep. … Life began to be hopping from one specialist to another… Birthdays, graduations, fiestas, christenings, deaths, etc.… Friends wonder why I don't come. At first, I had excuses. Later, I had to tell the truth about my normal-looking self that is all rotten inside. … I have learned to live with chronic fatigue syndrome… I have no other choice. Just stay away from any physical, emotional, mental stress. But what life is without that?

Sue B.: I was an RN in NICU, I left the day I could not remember if I fed a baby or not, my memory is gone…

Doreen: …my marriage broke up, I had to go on Public Assistance, I've lost the respect of my entire family (due to their denial of my condition), my closest lifetime friend couldn't cope with it so she has faded away…

I tell people to think about the way they've felt on the worst day of having the flu. They knew that they would get better in 3-7 days, but they still had a hard time dealing with it. …imagine having to deal with feeling that way, or even worse, every single day of their life.

Bobbi: While giving a technical presentation I knew something was not correct. My recognition and recall of information that I had used on a daily basis for years was hitting a blank wall. Words were not coming. I stood on the podium searching to get ideas/concepts across to my audience.