Patricia John's Story

What were the steps leading up to your diagnosis?

The first time I experienced fibromyalgia symptoms was in 1995, and I had numbness and tingling in my left leg. The next day it had spread to my right leg, then the day after it was like an explosion – I had terrible pains all throughout my body.

I went to the doctor and it took nine months to get the diagnosis of fibromyalgia though they had another name for it then. They put me on Naproxen, which would eventually cause me to have a duodenal ulcer. By 1998 the symptoms were fading, and then finally gone. I thought it would be gone forever.

Sixteen years later, after being diagnosed with costochondritis in October 2013 and asthma in March 2014, I started to have burning, tingling, gnawing pains all over my body. I would just sit and cry I hurt so badly. I made an appointment with my doctor, and when I went I took an outline of the human body that I had marked everywhere I hurt. There were so many places! She did a tender point test on me, and I hurt in 17 out of 18 tender points. She informed me that I had fibromyalgia.

I started to cry, and she didn't know why. I told her that I’d already had that, I remembered the pain. She told me that the fibro had gone into remission and now it was out of remission. This was April of 2014. It had come back and 100 times worse.

Who has been there for you? How?

My husband and my daughter have been my greatest support system. My daughter is in nursing school, so she is intrigued about what is going on in my body. My husband tries to do everything for me; his favorite words are, "Sit down and rest!" I am blessed to have such an understanding husband.

What lifestyle changes have you needed to make?

I was a woman on the go, I walked a lot, rode a bike, I loved to travel. I had to slam on the brakes on my activity level, learn to pace myself, and break down tasks around the house so that I can take rest breaks. Having activity-induced asthma with fibro isn't any fun either. Doing the smallest little thing causes fatigue and wheezing. I ride electric shopping carts at the stores to conserve my energy for the rest of the day.

What accomplishment are you proud of?

I was sent to pain management class. The instructor talked about finding something to do to keep our focus off of our pains. I took up crocheting. At Christmastime I made matching ear warmers and cowl scarves for Christmas gifts!

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

My advice to someone else with fibro would be get out of the bed every day. Take a shower and get dressed every day, even the days you don't feel like it. Keep moving, and listen to your body. Rest when needed.