Lynn: It is even hard for me to carry in bags of groceries, as my arms and shoulders just get so sore. But I also believe that this is a learning experience and I will be strengthened by going through it. ... It helps me to see what others go through… I am thankful for the blessings I do have.

Deanna: Others don't understand how bad I hurt or how tired I am that I can't do what they do. I try not to complain so everyone thinks I am fine because I look fine. Getting my housework done is a real chore for me. I cook meals sitting on a stool, I do one load of laundry a day, clean the kitchen in the morning because I am too tired to do so after cooking the meal.

Living with an FMer is rough too. The partner is also isolated by not being able to make plans because the partner may not be able to follow through.

Bobbi: For years I was employed by the United States Department of Defense as a Technical Trainer for Surface Warfare Systems. In this capacity I traveled extensively to contractor and government facilities on the East and West Coast. My body felt tired and ached. I had problems sleeping but I attributed this to being in several different cities, states, time zones, hotels, airports, airplanes and contractor facilities in the same day and doing a very stressful job.....

Alia M.: We've told you of the tiredness, the dizzy spells, the loss of stamina, the loss of physical and mental ability, and the plight of others like ourselves. …and tried to give you a fair estimation of how we feel. But the effects of having this disease are very personal.

I couldn't even carve a pumpkin for Halloween last October.

…sleeping wherever twenty hours a day, still produces a strange and lonely feeling, but I'm getting used to that. Today I went to take a shower. I couldn't stand for more than two minutes to wash my hair. My muscles were too limp and unwilling. I decided to go on-line. I couldn't sit up at the computer… My mom was now home and came to me so that I could talk to her. I told her I was scared. …she replied, "Of course you'll get better. The doctors keep saying you'll eventually get better, they just don't have a clue when.

C.W.: Prior to being diagnosed… I used to host all of the Holiday meals with our family and friends. Now I ask, "Who will be doing Easter?" etc. The pain and fatigue are constant. Little relief. Unfortunately, I am so fatigued that going to work on a daily basis is the most difficult. I have always enjoyed working. Now I am afraid to think about what life would be like if unable to work. I stopped telling coworkers that I am not feeling well, my response is great. When I am out I tell them I had a meeting, (though my immediate supervisor knows the truth).

Karen S.: I resigned from a 30 year nursing career 4 years ago when I realized two things: My memory was becoming very fuzzy (not good in an Emergency Room) and when I found myself "calling off" frequently because I "thought" I had the flu. It turned out, after several years with specialists, that it is fibromyalgia, myofascial pain syndrome and some associated autoimmune disease not diagnosed yet.

It is difficult to make social situations because of the overwhelming fatigue that can occur at any time.

Janet P.: I would love to get a job but know that I don't have the energy. … My days are spent mostly resting. In between "rests" I drag myself to do what needs to be done to get by.