I’m a thinking person, more correctly, I’m a worrying person. In my mind, there is always the vulnerable, neurotic child, afraid of the dark, running away from one phantom just to run into another, more frightening one. In some areas, it has served me well, such as in academics.
I worried about academic outcomes, and as a result, did fairly well, despite the socioeconomic realities that would have predicted academic failure. It was in pursuit of academic success that I first noticed problems. I discovered in college, that despite appearing very muscular and healthy, I was having a heck of a time getting to class. The walk from my car to the classroom was really giving me a beating. Being perhaps overly driven, I thought maybe I just needed to work out even more. That proved to not be the case. The more I worked out, the worse I felt.
Another thing became problematic. Whenever I made it to class, panting and with my muscles burning, I could hardly concentrate. I became infamous for spilling my coffee in a state of brain fog so severe, I couldn’t properly hold a coffee cup. Nor could I clean up the spill without making so many more errors that I had to be helped. The girl sitting next to me would bring napkins to class to clean up after me, and I was grateful. There was also excessive sleepiness partly from not being able to sleep the night before, and many times my arms flung to the desk just in the nick of time to stop my head from smashing it in half from cataplexy or a sudden sleep spell. Cataplexy is usually a symptom of narcolepsy. It’s when your muscles suddenly lose tone and give out, causing falls, or in this case, your head to smash into the desk. However, something other than narcolepsy was going on here.
My symptoms got worse as I aged. I became unable to tolerate tasks like mowing the lawn, riding a bicycle, and sometimes chewing food became a chore. My muscles would burn, my jaw would go into spasms as I try to eat, my legs would cramp and wouldn’t let go for minutes at a time. I had severe angina, which is chest pain in the heart area. I would sweat incessantly and become so intolerable of heat, I kept my room at 60 degrees. And worse of all, I would become dizzy and/or faint from standing up.
After suffering significant disability which made it impossible to hold down a job, I finally got a pretty good doctor, an internist. African fellow. He did something that surprised me and that many other doctors did not do. He listened to me. Then he thought about what I said and did some research on it. One of his diagnosis was: Fibromyalgia. It wasn’t the only diagnosis but it explained some of my symptoms and allowed for me to get the appropriate treatment.
Fibromyalgia is a little-understood illness. It is diagnosed based on the Widespread Pain Index, cognitive symptoms such as brain fog, fatigue, exercise intolerance, and sleep disturbances. These must be present for at least 3 months, and no other disorder should explain it. It’s the best medical science can do for now.
The fibromyalgia diagnosis was important. It allowed me to get treatment like gabapentin, which became my mainstay. Gabapentin is a calcium channel blocker based on the structure of the endogenous neurotransmitter GABA or gamma-aminobutyric acid. This medication greatly reduced my muscle pain; this, in turn, gave me energy. I noticed that fatigue and pain were greatly related. The pain was causing me to feel I had very little energy, even when metabolically, I may have had plenty of energy. Pain intervenes so that one stops damaging oneself long before a muscle is damaged beyond repair. Pain is what brings us to muscle failure, not a true destruction of the muscle because obviously, it would be your last workout if your muscles actually failed.
Learning that I had fibromyalgia allowed me to improve my quality of life and to amend my expectations about what is possible for me. There are some physical activities I won’t be able to do. I will have to pace myself to avoid a fibromyalgia crash, which is when you push yourself beyond your limit and become depressed, sleepy, and mostly inactive for many days afterward. What was most difficult is the social aspect. You will be seen as lazy and most people will look at you and deny that you could have any illness or could be disabled. I joined Reachout and fibromyalgia support groups. I discovered I was not alone in this. Many fibromyalgia patient stories I read conveyed the same thing, they all endure social condemnation for having an ‘invisible illness’. My diagnosis also allowed me to apply for state-run programs that help me get more work done by providing medical accommodations and state workers to help you rehabilitate your workability on the job site.
The diagnosis also caused me to face the fact that our bodies are not perfect and a body which can be described as having ‘fibromyalgia’ is not a cursed body. It’s a blessing to have the level of health that I have, despite my limitations. It’s a blessing to know about my condition and have others with the same condition that I can talk to about it. There are many things to be thankful for connected to being diagnosed, and I am blessed to have had a doctor who cared to listen, research, think about it, and come up with a diagnosis that has been so useful for me.
Daryl Seldon is a psychotherapist, writer, teacher, and consultant. He provides therapy to help individuals improve their understanding of themselves and the quality of their lives. He is also a technical writer and ghostwriter of creative fiction. He was diagnosed with fibromyalgia in 2012 and has devoted much of his attention to learning all he can to improve the heath and lives of those with this disorder. You can visit his personal website at socialscientistnetwork.com or email him at firstname.lastname@example.org