By: Elizabeth Kaffitz,
Late in my second pregnancy, my back began to ache. It was bad enough siting down or in bed, but it was really bad when I stood up. My friends and relatives sympathized. My doctor told me that it was common but would go away after the baby came. When labor began 2 weeks early, along with concerns for a healthy baby, I was thinking,
“Oh, good. Now the backache will stop.”
But it didn’t. Part of the trouble was lack of sleep. My son cried every night from 1 a.m. to 6 a.m.–when I had to get up anyway. This lasted for a solid year. By the time the year was over, my backache was considered to be chronic pain. By then there were headaches, widespread body pain, and IBS, too.
My “baby” is now 48. When the rheumatologists got together in 1990, they decided on a name: Fibromyalgia. I was diagnosed that year. Of course, for many doctors it was still “all in your pretty little head”. Nerve blocks seemed to have a 90-day warranty. Physical therapy made things worse by starting flares that lasted 4-6 weeks. Every so often there would be more testing.
Lime disease? No. Lupus? No. Myasthenia Gravis? No.
I was a teacher. I went to sheltered workshops and day treatment centers (for mentally ill adults) in two counties. This meant I carried a supply of books in my car for 5 subjects at levels from K-12. It was a lot of driving. A lot of lugging. By this time, it took strong opioids to keep the pain down to a level where I wasn’t crying all the time. I had trigger point injections every other week.
Then the double vision began. I drove home from work 34 miles with my left hand covering my left eye.
I crawled into my house.
The pain in my back was that bad. My pain doctor said it was time to go on disability. A neuro-ophthalmologist and physical therapist who specializes in eyes got my vision back to seeing only one object at a time.
But I was getting daily headaches that were a combination of tension and migraine. The doctors thought the weight of my glasses might be the problem. My vision was 20/400. I could read the “E” on the eye chart without glasses, but that was it. So, I underwent LASEK surgery. My right eye is for near vision, and my left is for distance. It took a little getting used to, but my vision is now 20/30. And the headaches are gone.
The fibro pain could be anywhere. But the back pain was a constant. It was escalating, so I had one more MRI. There was more impingement on my spinal cord. This is the way the N.P. at the pain clinic explained things: “When you lose control of your bladder, you’ll need surgery on your spine.”
I’m a proactive person. I started researching surgeons and hospitals that same day. I found the best hospital in the country. Luckily, my sister in law lived in a suburb of the city. After all that time, I can now stand without pain. Some days my back aches, but it’s not the same. It’s manageable.
I will always have fibromyalgia. Too many of my nerves have been programmed to only register pain for too many years. I’m 76. My arthritic hips and knees are the new and improved models. I have an irritable bowel and an irritable bladder. Fatigue can hit as quickly as turning off a light switch. Some days the fibro fog gets the best of me. I still get long term flare ups of whatever muscles I’ve been using, mostly at the attachment points. But, by pacing myself, by tweaking my medications, and by identifying and fixing symptoms that are NOT caused by fibromyalgia, my life has become fuller, richer, and less pain driven.