About 25 years ago, my sister and I took a road trip together. We shopped at every antique store between Hillsboro and Denton and ate at an adorable tearoom.
Our lodging reservations did not reflect that we would have one king-sized bed. I thought sharing a bed would never work — I would be cold and she would be hot. But after a few hours of catching up, we finally settled into sleep.
The next morning, my sister had a heart-to-heart talk with me. She was annoyed that I had moved my legs throughout the night, unable to get to a comfortable place — thus, she had not slept.
When we returned, she and my husband compared notes and decided I needed to see a doctor.
The next week, my sister shared with the rheumatologist what she had observed in my behavior: It wasn’t just the fitful sleep she told him about. It was my lack of energy and how she had observed me rubbing my arms and legs.
After the doctor examined me, he located 45 “trigger points” all over my body and diagnosed me with fibromyalgia. He is what I call a pioneer physician believer in the syndrome, as it was in 1990 that I was diagnosed. Most doctors then thought fibromyalgia patients were “head cases.”
Not so today.
There are no diagnostic tests such as X-rays or blood tests to detect fibromyalgia. Symptoms may overlap with other disorders. My symptoms were restless sleep, tender points all over my body, including my arms, chest, knees, lower back, neck, rib cage, shoulders and thighs, as well as gastrointestinal problems.
I hope my personal testimony will help those who think they may have this condition be diagnosed. More important, if you are diagnosed, I hope to help you learn to live with it. If you think you have symptoms, see a physician to be diagnosed.
I learned from the rheumatologist that the painful areas are in the soft tissue. The pain then spreads out from these areas. The joints are not affected, although the pain sometimes feels like it is coming from these areas. Sometimes the pain feels like a deep ache or a shooting, burning pain.
I was so fortunate to find a wonderful rheumatologist who diagnosed my condition and now have a family practitioner who draws my blood every six months in order to prescribe medications for treatment.
Here is what I have learned. Life can go on after you’re diagnosed with fibromyalgia. As with any other illness, it is all about how one deals with it.
My first big mistake was an honest one, and I am not sure it can be avoided. I told my insurance company I had been diagnosed with fibromyalgia. For the last 20 years, I have paid a hefty price for health insurance as it is considered a pre-existing condition.
Many of my friends who have fibromyalgia seem happiest when they stay active and have learned how to pace themselves, practice saying no and avoid overextending themselves. I have dealt with the guilt that goes along with having an illness that has no visible signs.
Physicians will tell you to get into a daily habit of exercise. Water aerobics is often recommended. I find riding a recumbent bicycle is my favorite form of exercise.
I am seeing many people make mention of fibromyalgia on Facebook. I’m so glad the syndrome getting its proper recognition. And while it may not kill us, we sometimes feel we are on the brink of death.
But as with any other illness, it cannot become an excuse. I am counseling myself as I write. Human nature sometimes looks for a reason to pull back, to not stretch for the stars, to not meet our full potential and get a little lazy. Taking one day at a time is often the best way to deal with the days when the pain is too much.
I might get a few eggs in my face for this statement, but it is best to just go on down the road and look for happy tomorrows. It seems that whatever we seek often shows up.
PAM RAINEY is a 41-year Denton resident and a real estate agent who has helped many seniors make decisions about living arrangements. You can reach her with suggestions at RpmRny@cs.com or 940-367-1188.