Paul Roy's Story

What were the steps leading up to your diagnosis?

I was diagnosed in 2008, but I think I have had fibromyalgia all my life, or at least bits and pieces. I began to notice something was wrong around 2000 – 2001, when I just never felt "right." During this time, I lost my dad and got divorced after 23 years of marriage.

When I would go to the doctor and tell him I wasn't right, each time he would tell me it must be this or that, but never mentioned fibromyalgia. It went on like this until I met a woman who happened to be a nurse. She gently ordered me to find a new doctor and have him test me for fibromyalgia. (The word ‘gently’ means she used the little stick to prod me, not the big one.)

I changed doctors, he ran tests and sent me to a rheumatologist, and I found out the woman was right. And she hasn't let me forget it since.

Who has been there for you? How?

Some of my family still don't quite understand what I am dealing with, as seems to be the case with so many of us with fibro. But I am soon to marry my nurse (and no she isn't using one of her sticks to make me) and she has been my support throughout.

What lifestyle changes have you needed to make?

Once diagnosed, I learned all I could about the condition. I learned it wouldn't get better, but could be managed. I also learned it wasn't the end of my life. Before my diagnosis, I was stressed about my health because it seemed the doctor didn't know what was wrong. So of course I assumed it was cancer and life was over. This stress actually made my condition worse. As I later learned, stress can cause flare-ups, and fibro can cause stress. I call this the cycle of stress.

I decided to not let my fibromyalgia beat me. I learned what I could do and what I couldn't do. I learned that when I needed to rest, I NEEDED to rest. I learned that as long as I kept taking my medications I wouldn't have as much pain. Unfortunately, I did need to make some changes. The first was I no longer could be a firefighter – I could no longer wake up in the middle of the night and drive to a scene.

Recently I also came to the realization I could no longer drive for a living – I realized the fibro was affecting my judgment (love that fibro fog). I ended up losing my job because of this but realized I could make lemons out of lemonade. I began freelance writing and editing from home. While I am still struggling to establish myself, I love it. I can rest when I need to, making me more productive.

What accomplishment are you proud of?

In an odd way my fibromyalgia forced me to finally follow my writing dream. I had always put off writing a book, or anything, for many reasons, mainly because I was too busy with other things. Now, because of fibro I have plenty of time and no more excuses. So, I finally wrote a book, and yes, it is about fibromyalgia.

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

I have learned that you can live with fibromyalgia. Yes, you will need to make some changes, but if you make the conscious decision to not let fibromyalgia beat you, you can beat it. Will you be 100%? No, but you can still be very productive, you can still be alive.