Tina King-Gilbert's Story

What were the steps leading up to your diagnosis?

At a very young age, maybe 7 or 8, I remember my mother telling me not to complain so much. My legs would hurt and I would have stomach aches. I remember thinking, "If she could just be in my body for a few minutes, she wouldn't think I was complaining!" Life went on, I got married, had children and competed in fitness competitions.

At the age of 24, my appendix ruptured and I almost died. I was so sick and frail when I was finally released from the hospital. I went back to bodybuilding, but had constant pain and discomfort. My stomach hurt and I had constant headaches. Everyone, including doctors and family, blamed it on my brush with death, even though I could still do everything I had always done.

Years later a doctor prescribed Vioxx for my constant pain and told me I needed to stop working out. I developed chest pain and quit taking the medication. At 30, I miscarried my fourth child and I suddenly couldn't get out of my own tracks. My friends and family blamed depression, but the fatigue was so great I couldn't get out of bed. I had horrible body pain, headaches, dizziness and chest pain. I felt like I was dying.

I finally went to the Vanderbilt University acute pain clinic. They tested me for everything; it all came back negative. Then a resident who had just been to a pain lecture decided to check pressure points. I had pain in 15 out of 18 locations – I finally had a diagnosis. But it was 2001, there was no treatment and the doctors couldn't suggest anything to make me feel better, other than to say, "Don't overdo it."

What lifestyle changes have you needed to make?

My workouts are severely affected. Some days I can't grasp the weights. I have tried several times to compete, but the extreme workouts are out of reach. I wanted to compete in a triathlon when I turned forty, but I couldn't maintain the pace of the training.

I have a hard time with my job as a nurse. Some days I can't help move my patients and I need assistance. How embarrassing is that?

I love to cook but frequently drop things because I can't hold them. I fall down a lot. I run into things all the time. My family finds this funny and I have to laugh with them or I will cry. I have to take special care of my skin because it swells and itches. If I don't pay attention I will scratch my arms and legs raw. I can no longer take vitamins or supplements. The fillers irritate my skin and my stomach. I sleep flat on my back because my hips hurt too much to lay on them.

Through all of this, I HAVE to keep moving. If I stop for just a day or two. I find it difficult to move. I refuse to give up my life. I grin and bear it and go to the gym. I work shift work at the hospital. My illness is truly invisible!

Who has been there for you? How?

My mother, believe it or not, has been my biggest cheerleader. She was diagnosed with fibromyalgia a few years before I was, as was my grandmother and my aunt. My brother has symptoms, but refuses to seek treatment.

My husband, who I just married this last summer and who is also a nurse, said to me, "I didn't think fibromyalgia was real until I met you." He's supportive, but still wonders why I'm moody and difficult sometimes.

A lot of my nurse friends are supportive and offer to lend a hand when I'm having a bad day. My kids have seen how bad my bad days can get, and they have never left me to fend for myself. They have gone so far as to cancel their plans to make sure I had dinner when I couldn't get out of bed.

What accomplishment are you proud of?

Between my diagnosis in 2001 and now, I have raised three children, gone to college and gotten a degree, gotten divorced, gotten remarried and am currently doing travel nursing. All of this in spite of my body and my illness.

What's your advice to someone else living with Fibromyalgia?

Don't give up your dreams. In my world of working out and exercise, we have a saying: "Pain is weakness leaving the body!" Well, if that's the case, I have a whole lot of weakness that needs to get out. Depend on your higher power and don't stop moving!

Is there anything else we should know?

I'm an optimist, always looking at the bright side, seeing the glass half full – even in light of this horrid, debilitating syndrome! I have my days when I want to throw in the towel. I want to cover up my head and wish the world away. But my family and the people I care for at work pull me back into reality and I'm up and at it.