Sue recalls her fibromyalgia diagnosis and explains how the diagnosis has affected her life.
I suffered from fibromyalgia for the better part of 7 years. I was in bed pretty much most of that time and it took a long time to get diagnosed, and I was from Michigan; I was living in the Detroit area and I knew that there was something a little bit wrong.
I always had aches and pains and I was always tired and I had friends, I did corporate training where you’d stand on your feet for eight or ten hours a day over and over and over again, and I had a friend that was ten years older than me and she could do back to back, week by week by week; I could do a half-a-day and then I would have to be in bed for a week, and I thought it’s just not right. I would go to doctors. They would say, “Well go here for physical therapy for your hips or this for that.”
When I moved out to Phoenix in 1998, I told a girlfriend of mine that I just wasn’t feeling well and she said, she recommended that I go to a doctor, her doctor and he diagnosed me with something called fibromyalgia right away.
He said he had to run tests because it’s a rule-out kind of a disease. There’s no test for it specifically, but you rule out things like lupus and other things like MS, that type of thing. There’s also some points that you can check.
Once I found out that I did have fibromyalgia the first thing that I did was go on the Internet and I started reading about all the symptoms and it was amazing to me that after all of these years I finally found out what it was, and it was really a relief in a way because I knew what I was dealing with.
There was no cure they told me and it was a major lifestyle change. I was a corporate business executive. I had my own business. I traveled around the country. I also had a lot of non-profits that I was on the board for and I was a stepmother and I was a wife and I was running around in many different directions.
I had to stop all of that when I found out what I had because I couldn’t keep up, and so I started going to doctors that gave me all sorts of medications, all sorts of injections, and I just always found out that I was totally exhausted and I spent most of my time in bed. I had to give up my business, ultimately had to give up my non-profit, and the way that I describe it is, my life went from ‘this’ to ‘this’ and because there was just nothing I was capable of doing. I was always in tremendous pain.