Before being diagnosed with my auto immune diseases I had no idea what most of them were, nor had I heard their names before. One of them is fibromyalgia, which to this day I’m still learning about.
When I first read about the symptoms of fibromyalgia I was skeptical. How could my body tell me I’m in extreme pain when it seemed like nothing was wrong with me? Why did I look normal on the outside but feel like I was on fire?
I can’t tell you how many times people look at me in disbelief when I try to explain what fibromyalgia feels like. It’s as if they think it’s all in my head and I’m looking for an excuse to use pain medication.
But if you’ve read my columns before you would know that I hate taking painkillers. Even if I am in uncontrollable pain, I’d rather stick it out and go the natural route. I would rather fix the problem than mask it.
I have several prescriptions for Dilauded, Norco, Percocet, etc. that I never filled or threw away because I knew I would never take them. If I can stay away from having to take one more pill I will do everything in my power to do so.
Wikipedia defines fibromyalgia as “chronic widespread pain and allodynia (a heightened and painful response to pressure). Its exact cause is unknown but is believed to involve psychological, genetic, neurobiological and environmental factors. Fibromyalgia symptoms are not restricted to pain, leading to the use of the alternative term fibromyalgia syndrome for the condition. Other symptoms include debilitating fatigue, sleep disturbance, and joint stiffness. Some patients also report difficulty with swallowing, bowel and bladder abnormalities, numbness and tingling, and cognitive dysfunction. Fibromyalgia is frequently comorbid with psychiatric conditions such as depression and anxiety and stress-related disorders such as posttraumatic stress disorder.”
When my friends ask me to describe it, I can only use one comparison, it’s like getting hit by a truck. Every inch of your body is in excruciating pain, from the top of your head to the tip of your toes.
It’s not something you ever learn to control and unfortunately there is no cure. It’s either going to control your life entirely or you might get lucky and some of the medications on the market may minimize the symptoms.
I wish that was the case for me, but I suffer day in and day out from a disease I once knew nothing about. For the last five years it has terrorized my body, driven me mad, and made me feel as if I was being punished.
The only people who seem to know about it are those of us who suffer from it and there aren’t very many options for medical treatment around. It’s as if all the cards have been stacked against us — and if that’s not enough we have to prove ourselves to others.
Unfortunately, there are more non-believers than there are people willing to see that a disease like this exists.
Although there may be no cure for fibromyalgia, there is a quick fix for ignorance. You can educate yourself and choose to believe people like me who truly suffer everyday from something most people know nothing about.
Making a person feel validated can make all the difference in the world.
Arlene Grau lives in Lakewood, California. She suffers from rheumatoid arthritis, fibromyalgia, lupus, migraine, vasculitis, and Sjogren’s disease.
The information in this column is not intended to be considered as professional medical advice, diagnosis or treatment. Only your doctor can do that! It is for informational purposes only and represents the author’s personal experiences and opinions alone. It does not inherently or expressly reflect the views, opinions and/or positions of National Pain Report or Microcast Media.