What were the steps leading up to your diagnosis?
In 1992 at the age of 26, I was in a bad car wreck. My pain initially was in my neck and shoulder area. (I had also broken my back in 2 different places.) The pain then announced itself on the surface of my skin, everywhere.
My doctor found that every trigger spot was painful. He couldn't be certain, but when chronic fatigue surfaced along with my chronic pain, he figured that's what I had. Full-fledged trauma induced fibromyalgia and myofascial pain syndrome. Every trigger point was tender to excruciating.
I stopped wearing underwire bras and stopped applying makeup because my face hurt so bad. I had "pain face" all the time
What lifestyle changes have you needed to make?
I couldn't wash myself without wincing or wear certain clothes I had before my accident. I even stopped wearing underwire bras and stopped applying makeup because my face hurt so bad. I had "pain face" all the time.
My two sons were always asking what was wrong and my friends always asked what was wrong. Which was a problem because you were always saying just hurting or saying nothing because the more you said it's "my pain," the more you hated what was happening to your body.
My sons just blew my pain off. They were sick of me hurting because I wasn't as active as I had been before the accident. The big problem with fibromyalgia is that others see nothing wrong because you look the same, but you know how it feels.
Who has been there for you? How?
I have had a tough time building a support system. I had support from one son, my doctor, a counselor that I began seeing and one friend. My parents and the rest of my family were 8 hours and a state away and no help.
I applied for disability insurance at age 40. It took social security four years to start issuing my cheques! That is when my parents stepped up with significant support and began paying all my bills for those four years so that I didn't become homeless and lose my kids. Without their help, I may not be here today. I was so stressed and depressed, which made my pain level increase.
What accomplishment are you proud of?
I moved to Michigan and gave birth to my second son with major complications. I had surgery a month later and had three doctors perform four procedures on me. I had a major latex injury that affects me to this day.
I still managed to open my beauty salon and was very successful for two years. It was a dream of mine I had fulfilled! I was wearing a catheter and bag strapped to my thigh the whole time, but I still maintained working.
After an issue with my husband's family, I sold my salon, and we moved back to Indiana. I worked for three more years until I couldn't manage all my physical issues and was let go on medical leave. As soon as I lost my job, my husband left me.
What's your advice to someone else living with Fibromyalgia?
Keep busy. Engage your brain with music, games, and crossword puzzles, and you will find that the distraction of what you were doing allows you a brief relief from your pain.
Keep moving too. I know it hurts to move, but its much worse if you don't. Remember that your family suffers as well. Try to continue doing it for your family so that they are less resentful to your illness.
Try Tai Chi as a family. They will benefit from the exercise as well. Please don't just sit on the couch and turn into a pumpkin. You will be miserable and will look 20 years older!
Lastly, be happy to be alive!
I will not stop searching and trying new ways for relief.
Is there anything else we should know?
I wake up in a good mood every day. Attitude is everything. I will not stop searching and trying new ways for relief. I need us all to find a way to have a good quality life.
