If I look back far enough, I can see extreme pain responses that began in childhood. I would twist an ankle, fall on my knee, or sprain a wrist and I’d be writhing in pain, crying that it hurt so so bad, and people would tell me to stop being dramatic, quit overreacting, had I ever heard of The Boy Who Cried Wolf?
My fibromyalgia diagnosis didn’t come until my mid-twenties. Over the course of a 14 month period, I was rear-ended three times. Each time I was at a complete stop in traffic, minding my own business. The first almost completely wrecked my pick-up truck. I had damage in my lumbar spine in addition to the usual whiplash. That was the worst of them. The second was not near as bad, and the third was so minor that my car didn’t even need repairs.
The doctors told me I had no physical reason to be in pain, called me a drug-seeker, and sent me on my way. It took almost a year after the third accident before I found a doctor who would believe I was in pain. Exhaustive tests ruled out lupus, arthritis, Lyme Disease, Multiple Sclerosis, and who knows what else before they started poking at trigger points and finally told me I had an incurable and essentially untreatable condition. The rheumatologist, who is supposed to be the expert in All Things Fibromyalgia, told me that patients who don’t have arthritis were a waste of his time, try a Pain Management Specialist.
Back to Square One, as far as being treated like a legitimate patient. I must have been through every pain management clinic in a thirty mile radius before I found one who would actually treat me. It took another year of trial and error misery to find a cocktail of pills that would make my life somewhat livable.
Then I lost my job and with it went my health insurance. The fancy new anti-depressant recently approved for fibromyalgia went from a $40 copay for a one month supply, to over $600 for the same prescription. No generic. Combined monthly out of pocket expenses went from around $150 total, to $150 just to see the doctor each month. Prescription costs would have been almost $1200 monthly, so with the help of my pain management specialist, I weaned down to the bare minimum bang-for-my-buck I could get: a low-dose narcotic that cut the pain down enough that I could manage daily life without a plethora of uncomfortable side effects.
Fast forward another few years, and I’m beginning the same fight all over again. Recent changes in opioid guidelines have patients in a panic. Will we still be able to use the only medicine that dulls the knife of pain that cuts through our bodies each day? Are we going to have to endure the torture of ineffective injections or run through another trial and error (and error, and error) of “approved” medications and their side effects? What more must we endure? It’s bad enough when our family, friends, or even complete strangers treat us with disdain or indifference. Is it really too much to ask that the medical community try to set a better example?
Chronic pain makes you really rethink your priorities. When you’re constantly making decisions about what you will use your precious energy on, you really come to have a deeper understanding of what is most important to you. For me, it comes down to compassion. Maybe it comes from having received so little of it, over the course of my chronic illness journey.
Written by Vanessa Blevins.
Vanessa is a Spoonie mom with three kids. She has Fibromyalgia as well as a few other conditions that range from sensory processing disorder to mental health issues. She enjoys managing a few online support communities for people with chronic illness, and helping spread awareness and compassion.