The real pain of fibromyalgia
Imagine living your life day-to-day dealing with unpredictable pain and energy levels to the extent that you know in the back of your head those levels can change at any moment, and you may not be able to do things you want to and have committed to do.
And you don’t look sick to anyone who sees you on the street. In fact, some doctors have told you that the debilitating pain and energy level is not a medical condition at all. Some even think it’s made up. You just need to “tough it out.”
But your pain is real, and at times it is unbearable. Your energy level can shut you down without even a moment’s notice.
Such is the life of a person with fibromyalgia.
My wife, Michelle, first experienced symptoms of fibromyalgia in 2016 while we were living in New York City. Initially, we thought she might just be doing too much. She is a disabled veteran who wanted to volunteer as much as she could in our ministry in Brownsville, Brooklyn. It made sense that she might be pushing herself too hard.
But even as she slowed down a little, the symptoms continued — severe pain and fatigue. She started going to bed at 9 p.m.
That was probably when I started to get concerned. She had always enjoyed going out and doing things or staying up late into the night. She would laugh at me if I started yawning at 10 p.m.
It took months to get a diagnosis, because the only way to confirm fibromyalgia is to rule out everything else. There were many trips to the VA hospital in Manhattan for tests. Those trips usually led to her being wiped out for the rest of the day.
Finally, in October 2016, the diagnosis came. A VA doctor, who had a lot of experience with fibromyalgia patients, examined her to assess her pain level in 18 different areas of the body. Fibromyalgia is diagnosed if a patient has significant pain in 11 of the 18 spots. On that October day, Michelle had pain in 16 of the 18 spots.
She has been doing the things doctors have told her to do to deal with the pain and energy level ups and downs. She works out at the gym weekly — much more than I do. Still, it is a condition that doesn’t go away. We decided last year to move back to the South, where she could be in warmer temperatures and be able to drive a car instead of all the extra walking in NYC. It has helped.
Michelle describes fibromyalgia as, “All the nerves in my body are hyperactive.” They are constantly recognizing pain and leaving her body fatigued.
Her life is not in danger, and many who know her may not even notice when she is hurting and exhausted. She doesn’t look sick, but she lives with it every day.
Michelle likes to think of her energy level in terms of “spoons.” The idea is based on a story called “The Spoon Theory” by Christine Miserandino, who used spoons as symbols of the energy she has every day and how many spoons (energy) each task will cost her. Miserandino has lupus, another chronic pain condition. You can read more about the theory at https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/.
Michelle usually starts off her day with a good — but not unlimited — number of spoons. On good days, the spoons are plentiful and she is very active. Other days, the spoons seem to disappear more quickly. She is a person who pushes herself, so she will try to keep going. Eventually, she will run out of spoons and have to rest completely. The effects of fibromyalgia are so unpredictable.
I live with her every day and I don’t think I understand how difficult the pain and energy issues are. I know they are overwhelming. I see the pain in her eyes and it breaks my heart, but I don’t physically feel the pain.
And Michelle is not alone. There are millions of people in the United States dealing with the same struggles that Michelle faces in battling the invisible sickness that is fibromyalgia. Estimates are that 3-6 percent of the world’s 7 billion people wake up every day wondering how many spoons they will have to go through that day.
Saturday is Fibromyalgia Awareness Day, and many people who suffer from the condition will be wearing purple — the color symbolizing the condition. If you know someone with fibromyalgia, make sure to offer them some encouragement and a smile. Maybe you can even give them a purple spoon.
They will appreciate it.
Norm Cannada moved back to Oconee County after spending nearly three years in Brooklyn, N.Y. He is enjoying the journey adjusting back to small-town life and learning he doesn’t know everything as he grows older with his wife, Michelle.